Emmie
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Past Updates
Past Updates
CHOP Neurology doctors now believe that Emmie is having seizure activity. The EEG showed further brain damage, in a new area, besides for the damage from her cardiac arrest and strokes. The area of the brain showing new damage would make sense for seizures. They gave me a letter to carry with me, and when Emmie has another "episode", I will have to bring her to CHOP through the emergency room. The letter gives instructions for several tests to be performed during the episodes. Hopefully this is a step in the right direction. I will keep praying ! God bless !!
October 13, 2003 
Thank you to all our church family for praying for Emmie at Praise & Worship night ... I was hoping that church would help her come around a bit & it helped me, too! It's been a rough week and it was such a blessing to be with our church family!
She has improved a lot over this weekend ... no more vomiting praise the LORD!!!! She even started sitting on her own a bit tonight & is talking to us again!!
When we arrived home from church tonight Emmie's doctor called to check on her. He asked if her eyes roll with these episodes & when I told him yes, (I've mentioned it to other docs before) he told me he thinks she is having seizure activity. That would explain the lethargy & the altered mental status every time.
Since she suffered such severe brain damage from when she coded last year, and also had seizures during that long hospital stay, seizure activity is likely. This will have to be followed by Neurology.
Please pray that we can get an appointment with Neurology quickly to look into this. They will have to do a 24 hour EEG the next time she has one of these episodes, so we will need to have all the equipment ready ahead of time. The Pediatrician is going to try & talk with them & "remind them" that she had a flat line EEG in the past, hoping that will speed them up. (It's very hard to get in to CHOP for outpatient appointments). The big concern is that the episodes are now becoming more frequent.
One last thing ... the owners of Prospector's in Mt Laurel contacted me & they are having an awesome benefit for Emmie! This will be held on Monday, Nov. 17th and will include a buffet dinner, chinese auction & two live bands ! 100% of the proceeds will go to Emmie's Fund to help with medical bills that keep pouring in & the wheelchair adapted van Emmie needs. We are so blessed. God is good !
Thanks for the prayers & please keep them up !
Blessings....
kim
Sunday, December 22, 2002
Hello all,
PLEASE pray for Emmie ... she started vomiting soon after we left church this morning. She wasn't looking well in church so I stopped her feeds, but apparently she is having this vomiting thing again. The docs feel that it's a "central" thing (from the brain injury). The problem is, she gets dehydrated very easily & they want her admitted for IV fluids. She now has NO access since they removed that Broviac Catheter that was infected last week. If she continues being sick I will have to take her to CHOP and they will admit her. We do NOT want her in the hospital for Christmas !! Thanks for praying !!
kim
Wednesday, December 18, 2002
Sorry it's been so long for updates. We are home once again.
Emmie had her first post-op visit with the Pediatrician today. She is looking good, and we pray that she won't pick up any colds or flu. (tis the season as the doc says). Her T-cell function is very poor. (Immuno-compromised).
The surgeon has placed her in the highest level of chronically ill - the same as Oncology, Transplant, and Pulmonary Hypertension patients. (we have to be very careful as far as germs & handwashing).
A BIG praise report is her WEIGHT !!! Despite getting virtually NO nutrition for several weeks, she is now GAINING WEIGHT !!! Apparently the G-tube (in the belly) is better than the NG-tube was for her absorbtion problems. Before she was admitted to the hospital in August, she weighed barely 19 pounds, and today her weight was a WHOPPING ... 27 POUNDS !!!! I thought the scale was broken !! haha This is GREAT news !! A MAJOR factor in her health has been her malnutrition, and the docs have been trying & trying for her to gain weight !! Seems we found the way !! Praise GOD !!
Of course there's still all that doctor nonsense of how her heart is still very sick, and they don't expect her to live more than a year tops (I am marking my calendar so I can remind them in a year !!!)
There is talk of a "transplant" ... heart and lung transplant ... I do NOT want to go there !! I have seen WAY too much and it's NOT good !!! (LUNG transplant is not good). "THEY SAY" that her lungs will gradually deteriorate to the point that there is nothing else that THEY can do. Could be a short time. Then they may consider transplant. GOD has the final say of course.
I am so incredibly GRATEFUL and HUMBLED by what He has done in her tiny body. Most of you read the email updates, but I could never really express how very, very bad she really was. It was VERY grim. Medically, there was NO hope for her at all. God performed a MIRACLE in her - MANY - and the docs KNOW IT !!
I just pray HIS will over this situation. I pray that however long he has for her to be here, that she will be a testimony and her days will continue to be filled with JOY !! She certainly has the JOY OF THE LORD !!
And she is BLESSED by all of your PRAYERS !!! (me,too) THANK YOU !!!!!!!
kim
Wednesday, December 11, 2002
God showed me something today ...
I have been so anxious to get Emmie out of here, and thinking HOW can I get all the Christmas "stuff" ready for the kids in time, being here for four months, but He's showing me that He is still using us. HE needs us HERE.
I thank God that He has put me here & I have had the chance to witness to the roommate's family. She is fascinated at me having 5 children and being here & having them all with me - a great opportunity to tell her that it's all JESUS !! He gives me the love for them, He gives me the patience to be here at all, and He gives me strength to keep going. Without Him I am nothing.
She seems quite amazed. I also shared how Emmie is a MIRACLE and how she has been healed !! That all doctors agree she is a miracle - (and THEY did not do it !!)
Apparently this Mom prayed (to whoever ???) and then she had a dream where an ancestor came & told her not to go through with the baby's surgery. Very tough situation.
Emmie's nurse today is a believer, and she said it's so hard because they are not ALLOWED to share their faith. I said well, I AM!! And I have & I will continue.
See, it all comes together & starts to make sense why we are still here - God is certainly using Emmie a LOT - all for HIS glory !!!
We humbly & happily accept this from Him !!
Love in Jesus,
kim
Wednesday, December 11, 2002
Today the doc said they want her here at least until Saturday unless her IV blows, and if it blows they would put her on PO meds and send her home (so of course I am rooting against an IV for the first time ever haha).
Christian made a paper snowman today & made it sad because he is sad when he has to leave Mommy. Breaking my heart!!
Well everyone has pictures on their doors to their rooms, so that's where I put the snowflakes that we had to take down from the ceiling. At 1:30 am the nurse came in to tell me they have to come down - nothing allowed on the door !! GRRR (not sure if it has anything to do with the "happy birthday Jesus" sign we also hung there). Who knows. Just can't figure this place out !!
Please pray we get home soon !! Thank you !!
Love in Jesus,
kim
Monday, December 09, 2002
Please keep praying .,,
Christian is taking this very hard this time. He won't even say goodnight to me any more - he just shakes his head no. I pray we will be OUT of here soon !!!
Tonight they came & made me take down her Christmas tree we got her!!! It was just a tiny fake one we decorated. I dunno if it offended someone or not. They also told me I have to take down all the paper snowflakes the kids made for emmie.
Our new roommate has a respiratory infection - very risky for emmie !! Please pray for this baby - the family are Buddhist & they are refusing a simple surgery that will save his life, because they believe he will be reincarnated into something "better". I am very familiar with his heart defect, and the repair is one surgery which is routine here. The docs have been intimidating the mom & threatening to take her to court. I guess I am not the only Mom causing trouble around here !!
The Infectious Diseases docs want her to be in here for at least another week !! I, of course, am fighting this. Please pray that they let her go in God's timing and that she's not exposed to any more infections !! Being in the room with this other baby is dangerous for her.
Thank you all !!
kim
Monday, December 09, 2002
They took the infected Broviac Catheter out of her yesterday morning. Her surgeon came to see me just before she went, and he said if he knew we were here, and that the line was infected, he would have had it out the first day !! I had been asking them to page him all week & they told me they didn't think he was around. He was pretty upset to know that, since he was here. He said he is VERY concerned, but he is "rooting for her" and his hope is that they get the line out and she starts responding to the meds and recovers within a week.
Well, when they took her away to the OR her heart rate was in the 180s. As soon as she got back and was in ICU her heart rate was in the 130s !! And her fever is gone !!! Praise God !
The doc who did her GI surgery is now saying that the malrotation she had was NOT the cause of her vomiting in the past. This is what he did the surgery for - so he's saying it didn't fix it !! He says her vomiting is another central thing - from the brain stem injury. Something is being triggered in the brain. He would like her to have a prescription of Zofran to go home with for the future for the vomiting. Hopefully this will stop her from vomiting to the point of dehydration as she has been doing.
For now, she is once again tolerating her tube feeds and they say she can start eating by mouth in the morning !! She is VERY happy about that !! Every time a doc comes in the room she says, in her own little way, "Emmie better ... Home" ... How cute !! It's GOT to be getting to them!
They do need to continue the meds, however, so they are saying she will be here for a while yet. Of course I worry that she will catch something else the longer they keep her here. But I have to just trust in God & know that He will protect her & she will go home in HIS timing.
It's been hard on the other kids especialy this week now that she's back in, so I left her in God's hands today to spend some time with them. We even went & got a tiny tree for her hospital room & brought it here & decorated it with her this afternoon, They all really enjoyed that. We all needed a good escape.
Thanks for holding her up in prayer !! She's a miracle !! All for HIS glory !!!
kim
Saturday, December 07, 2002
The infection is not responding to any of the 3 biggest antibiotics they have. We are heading to the operating room in about 30 minutes (its 10 am).
Her surgeon just came by - he said he's very worried. I thank God that He doesn't put a limit on the number of miracles a person can have. She needs another miracle !!
They are calling for a psyche consult. They say she is clinically depressed. (well, duh - get her better & HOME for more than 8 days !!)
She woud be cheered by visitors. Friendly faces do wonders !!
God bless
kim
Thursday, December 05, 2002
At 6 am the doc came in to tell me that Emmie has a blood infection.
This is that worst case scenario they were worried about.
It's very serious. They are very concerned.
PLEASE PRAY !!!!
kim
Thursday, December 05, 2002
Well, here we are again ... the docs say at least she had 8 days home.
Her temp has gone over 106 and she is on oxygen again.
The chest x-ray showed pulmonary edema (fluid backing up in the lungs from her heart not functioning for some reason). They also suspect pneumonia, but the x-ray wasn't clear enough to be sure.
The other huge concern is the broviac catheter - they think this line may be infected, and if so, she could have a blood infection again - very serious.
She got so much worse so very quickly once we got to the hospital. At one point she turned absolutely gray & the docs RAN to her. Her sats dropped to the low 70s and she was really working to breathe. Her heart rate has been in the 190s !!!! The heart rate is most likely from the high fevers.
Please pray that this will end up as some silly bug & she will stop vomiting, tolerate her tube feeds & she can just GO HOME SOON !!!
Our little friend Alexis (the one with the website I sent) ALMOST got a heart yesterday !! The parents were told it was on the way & the dad started heading back here from Colorado. Then an hour later they were told it was a miscommunication !! Apparently there was another baby somewhere else who had been on the list a week longer than Alexis !! Of course Sarah & Shane are pretty upset by this. Please pray !!
Emmie's doc said if she has an infection in this line, she will probably not be home for Christmas. (good thing they don't know everything !!) ... God's will ...
Thanks for praying !!
Love in Jesus,
kim
Tuesday, December 03, 2002
Well, she has been doing pretty good - I was going to send an update anyway - but tonight around 6:30 she suddenly spiked a temp over 104 and started vomiting. The doc thinks the broviac catheter line may be infected. This is a central line, and they do get infected, and if this is the case, it could be very serious.
Her heart rate is over 180 and she is very pale.
The doc told me to give her Ibuprofen and wait 2 hours. If she doesn't greatly improve, I will have to bring her to Children's Hosp. She will be admitted. Otherwise, we may be able to wait till morning. Either way someone will be seeing her by AM. Her pediatrician is very concerned about this central line.
Please pray that God will HEAL whatever this infection is and we can STAY HOME !!!! Enough of hospitals already !!!!
Thanks,
kim
Monday, November 25, 2002
Praise God we are HOME !!! Yes, HOME !!! Emmie is thrilled !!
She made a huge turn around with the feeding issues over the past 24 hours or so !! She is at full feeds at full strength and back to eating a little by mouth, and they wanted to be sure she got home before her birthday on the 28th.
Please continue to pray. She still has the collapsed lung, a pretty bad cough, AND they kept the Broviac Catheter in her chest !! We are scheduled to go back in about 10 days, and they are not sure what they will need to do then, so they kept the line in for access.
They squeezed me into a G-tube class and Broviac Catheter class the last couple of hours before we were discharged !! I have to flush the 2 lines in the Broviac daily and change the caps & dressing weekly. The dressing changes have to be absolutely sterile. The kids got a kick out of me putting sterile gloves on without actually touching them !! Pretty tricky !! I have never been allowed or even shown any of the care of the Broviac, and it is very risky. The docs told me if I forget to clamp the tubing when I flush or change caps, air will get into the line and she could die instantly. Gee, no pressure there !!
She also has the new G-tube which I just learned today how to change the holister on. If this tube is pulled out, the stoma (hole in her stomach where the tube goes in) will close up almost immediately, so I would have to insert a catheter & rush her to CHOP for them to place another tube. (no pressure there either !!)
I sure am glad that I know GOD is in control !!!! It would be pretty scary if I thought I was really on my own !! I know we will be fine. (but thanks for the continued prayers !)
God bless ...
kim
Sunday, November 24, 2002
She is up to full feeds since noon today and so far no gagging at all !!! PRAISE GOD !! Now we just have to take care of this collapsed lung & get her meds changed into the tube instead of IV and she will be looking good !! Her sats are still low and she looks a little blue, but apparently they are going to let this be the new "norm" for her - lower then when she came home from Korea, but it probably has to do with the collapsed lung. She is not getting sufficient oxygen. I think they may even send her home this way, with me doing chest p-t at home.
They are having me take a class on the G-tube Monday evening, so that looks like they are thinking she may be home soon !! Of course they won't tell me that when I ask - they just say we never know with Emmie !! I think she is looking great and ready to go home SOON ! Hopefully she will be HOME for her birthday on Thursday - LOTS to be thankful for !!
I ran into her cardiovascular surgeon in the hall yesterday while walking her in the wheelchair & he had TEARS in his eyes at the sight of her !! He said "She is my star!!" He is absolutely THRILLED !! I told him God is healing her and he said YES, THIS IS A MIRACLE !!! She is a witness to so many here !! ALL for GOD'S GLORY!!
They still are not letting her take anything by mouth, so she is pretty upset about that. She cries a good part of the day asking for "eat" - keeps us hopping to distract her ... Hopefully she will be able to eat soon & her spirits will be up.
We are still on the 6th floor Children's Hosp of Phila. Visitors cheer her up a LOT !! Even when other moms stop by from the unit she lights up. THANK YOU all for the prayers !
kim
Thursday, November 21, 2002
Her IV blew last night around midnight & they got one in after many sticks - then by 6 am that one had blown too!! IV "big guns" came up & stuck a few times & got another in. He kept saying they should have put a line in when she was in the O.R. I asked him to say something to them, they just don't listen to me on this one.
The surgeon came up after that & said the way things are going for her, they will not be able to even try starting feeds for at least 4 or 5 days !! So, on that note it was decided that she needed a permanent line to get hal & lipids (calories). She has been getting no nutrition again since Sunday.
So today she went into the O.R. again planning to get a PIC line. They couldn't even get that. She now has a Broviac Catheter. This is a huge line in the largest artery going into the heart. She will be getting her nutrition (only 369 calories a day) and meds in this line.
Her blood pressure is still WAY up - higher than ever. After her captopril tonight, which is supposed to lower it, it went up even higher. So they have now added another med - milrinone infusion (continuous). She hasn't been on that since she was very sick in August & September. Glad they are finally addressing it, but they still have no clue why it's so high.
She still looks awful. Very pale and so weak. And she looks sad. That's what everyone says who looks at her. One doc said she is shutting down. I would too if I was back in this place & going through all this stuff again.
Her sats are still low - dropped down to the mid 70s for about 20 minutes today, and hasn't gotten out of the 80s all day, so she's getting oxygen as needed. They are not sure why this is either.
So with the new plan of the docs, it looks like she is spending her birthday (Thanksgiving) in here. Any great party ideas, please let me know. We will have the playroom available for a party.
I would love to try & make her feel like she is NOT here. Needless to say, the kids & I are all pretty bummed that things are going this way. One nurse said I hope you get home by Christmas ! GRRR
Thanks for prayers, as always !
215-590-6654
kim
Wednesday, November 20, 2002
Well, we finally made it out of ICU and over to the floor around 6 pm.
They were trying to draw blood all day & no one was able to get anything so far - many sticks & nothing - even the Head Cardio came & couldn't find any pulses in any arteries to try for. They need to check her hemoglobin - she is VERY pale - she looks bad. Her hemoglobin was kinda low 2 days ago, and if it's lower they will need to give blood, but also try to figure out if she now has internal bleeding !
Her sats are still dipping low AND her blood pressure is way up. The nurse has finally said she will tell the docs now.
She is still vomiting, so feeds will not be started yet - she is getting only IV fluids again !! Her lungs are congested, so they will order an x-ray to see if she has been aspirating when she vomits & may have aspiration pneumonia.
I was warned that there is a lot of flu/virus stuff over here, and they have not only NOT put Emmie in an isolation room like her doc wants, but they have put her in a room with FOUR patients !! I pray that she will not pick up any bugs - we know that would be a HUGE setback for her !!
They are going to try & get blood again after 8 pm when the new shift comes in - please pray we will get answers & soon !!
Thank you !
New room # 6269, bed 2 ... phone #215-590-6654
kim
Tuesday, November 19, 2002
Well, I was hoping for things to go "normal" for once, but they all laughed at me & said you know Emmie !! Man I hate it when docs are right - I sure am glad that's not very often haha ...
They were planning to get her out of ICU the first day. Then at least by this morning. Well, she is still there tonight. She is not waking up, only to wretch, and the NG tube was draining off a LOT of fluid. They decided to pull it tonight anyway, and see how she does. So about a half hour ago they started meds in her new G-tube, and she vomited up all the meds. Apparently her intestines are not working. Hopefully this is from the surgery & all the messing around he did in her tummy and it will improve soon. She looks absolutely miserable !! They are only giving her Tylenol for pain, because she had all the narcotic addictions so recently.
She is still requiring oxygen which concerns me, and her blood pressure has been going up also.
I am hoping they will send her to the step-down unit tomorrow. It's quieter there and all her siblings can be in her room at once. It's been hard for me juggling everyone, especially since they won't let Kira watch Christian in the playroom, so he has to sit at the bedside with me unless there is a volunteer in there (which isn't very often).
Most importantly, her earrings look great haha ... I will keep you all posted. God bless & Emmie thanks you for the prayers & love !!
Phone # to CICU is 215-590-2644.
kim
Monday, November 18, 2002
Well the surgery was over in about 90 minutes. So different from those 9 hour open heart surgeries !!
The surgeon said he cut out part of her intestine and also removed her appendix, which happened to be in the wrong place !! Then he put in the G-tube. He said he is not sure if this surgery will fix the problem. He couldn't be sure if this bowel problem is what was causing the vomiting.
Finally, the cardiac anesthesiologist pierced her ears !! She has been asking for earrings like her sisters, but I was always hesitant, worried of infection, but the cardios said let's go for it, she will already be on antibiotics !! So she thinks she came in to get her ears pierced !! She will tell you all some day, "Don't ever get your ears pierced !! You end up with IVs & tubes & oxygen !! heehee
Now for the post-op stuff ... her heart rate is WAY up and the cardios don't seem to know why. They assumed she was dehydrated & they have been pumping her full of bolis doses of fluid, but it hasn't changed. Also, her sats (pulse ox) are low. She has had to stay on a high rate of oxygen also. She drops way down if they turn it down at all. For the most part she has been asleep, but she keeps waking up to vomit. Apparently this is a side effect of GI surgery. Silly me not to expect that.
So they are watching her closely. The surgery itself seems to have gone well. It's the cardio recovery stuff that gets her.
Please pray for a quick recovery for her !! And that she can be HOME before she turns 3 next Thursday !!
All of the docs & nurses here in the ICU are in complete AMAZEMENT over her recovery since this last hospital stay & all the complications. God is getting ALL the glory here !!
Emmie is covered with the blanket the 3 & 4 year old Sunday school class made for her, with their handprints of where they laid their hands on it & prayed for her. It reads:
"On you our hands we lay, and to the Lord we pray, that He will bless those holding you, and make you well today". MANY comments on that !! Everyone here now knows for sure why Emmie is doing so much better than ever expected !! And what better thing to cover her with - prayers of her little buddies !! THANK YOU ALL !!
Thanks for keeping those prayers coming !!
kim
Monday, November 18, 2002
It's around midnight & I just finished loading the truck for our hospital stay ... time to give her the last meds in the NG-tube. She & I are both happy to be saying goodbye to this tube - I hope the G-tube will be easier on her.
Honestly, I am not all that excited about going back into the hospital so soon - but God has been healing her in such amazing ways, so I just lean on Him. He is the ONLY way I got through any of this the past 3 months. And He has been making it very clear to me that He is not going anywhere !! He is so good - so faithful - so merciful. I am so honored & THANKFUL that He has chosen ME to be Mommy to these precious children.
I need to have her there at 7:30 am, and surgery should begin around 8:45 or so ...
I will try to send an update as soon as I can ... thanks to all of you who have been asking for them !!
God bless all ...
kim
Wednesday, November 13, 2002
Emmie decided today that she is tired of just sitting around & she CRAWLED across the room!! PRAISE GOD!!! The docs said she would probably never be able to crawl again. I am believing that she will be WALKING again !! God is so good !!
Please keep her in prayer. She is still struggling with some of the affects of the brain stem injury, and she gets very frustrated at times. She still has the "choreo" movements, although they are much less violent, and not nearly as frequent.
Also her sats (pulse ox) have been pretty low. This shows the amount of oxygen in her blood. She was in the mid to upper 90s before this last hospital stay, and now she is in the 80s.
She is having another surgery on Monday. (the one for the G-tube and hopefully repairing the obstruction). I am hoping to have her home before her birthday, which falls on Thanksgiving this year, the 28th.
Please pray for wisdom for the doctors, cardiac anesthesiologists, and all involved. And for a QUICK recovery with NO complications.
Thank you !!!
kim
Thursday, November 07, 2002
Well, we saw the surgeon and he does NOT want to wait for the obstruction again. He has scheduled her for SURGERY next Monday, the 18th. We are hoping that she stays healthy until then. He plans to go in & look and he's thinking he will see the malrotation and fix it then. He will also put in a G-tube (the feeding tube directly into her stomach, instead of going through her nose down to the stomach like she has had for about a year now). We have been waiting for this G-tube for a long time. I think it will be much easier on Emmie.
The cardiac anesthesiologist says Emmie will have to recover in the CICU (cardiac ICU where she was before) and then to the cardiac step down unit again. They are hoping she will only have to stay for 5 days or so. Her birthday is on the 28th, just 10 days after surgery. She may still be here for all we know. Hopefully we can get some visitors in to see her & make it special. I know it's going to be hard on her going right back in again so quickly.
She has been doing pretty good at home, although she keeps saying "bye-bye". Maybe she just wants to get out after all that time inside, who knows !!
I will try to keep you all posted - kinda hard without a computer. (We are at the library now). Hoping to get ours fixed soon. The one at home was never repaired after it had been struck by lightening and now the computer guy tells me it's too old to get a modem for it. It's all up to the insurance guy now.
Please keep praying for Emmie - her heart is still very sick, and now she is going into yet another surgery. I can't believe how much she is going through. What a little trooper !! She just keeps smiling !!
God is good.
kim
Friday, October 04, 2002
Well, this vomiting has them all stumped. Including the GI Department. They say she is constipated and they want to give her enemas and drugs to help that. Apparently they feel something in her belly.
They want to do an Upper GI but they decided that at 7 PM on a Friday !!! GRRRR Now we may have to wait till Monday - and she is getting NO calories in the meantime !!
They think there may be an obstruction, which would have to be corrected surgically, or it could be central, where her brain isn't sending messages to her intestines, like the fevers, and be permanent, in which case she won't even be able to have tube feeds. They were hoping to at least tube feed her if she won't ever be able to take anything by mouth.
They plan to put in a semi-permanent line, a broviac catheter surgically put into the vessel going into the heart, for her IV meds & nutrition. Looks like that will also have to wait until Monday at least.
We went to Opthalmology for that test today. The doc told me he cannot tell to what extent her vision is impaired, but he did say that he believes that there is a POSSIBILITY that it can improve, but no promises. I know for sure she can see at least some, or sometimes. Today she POINTED to each of her siblings when I asked where each was !! She is very weak & shaky, but she definitely recognized each one !! A GREAT sign vision-wise, and cognitively.
She also reached for a ball Kira had in her hand & tried to hold it !! I also asked her if the lady gave her a boo-boo on her finger this morning & I asked, "Where is your finger?" and she slowly held it up !!! Praise the Lord !!! They still say she has had a stroke, and many other "hits" to her brain, and at least some will be permanent.
They have no way of knowing to what extent she can improve, but they are not hopeful that she will ever walk, or even eat by mouth again. I will leave all that up to God thank you very much.
I am able to get her out of her crib whenever I want to, and hold her, and she's been getting much better with the thrashing around. I can usually even calm her now !!
Things are improving medically ... baby steps ... we just have to get over this GI stuff now, and start neuro rehab so we can get out of here someday !! Emmie needs to see everyone she loves - she misses you all I am sure !! Love in Jesus,
kim
Friday, October 04, 2002
Well, she is on day 4 of vomiting now. She is getting Benadryl to
help that. They just keep doing abdominal x-rays and moving the NG (feeding)
tube in & out farther & doing anoher x-ray. But they don't think the tube is
causing the vomiting, Nor a virus or flu or anything like that.
I saw her surgeon tonight over on the other unit. I updated him & he
wants her to get an upper GI. She is not assigned to him anymore, so he
doesn't get report on her. He said he is here again tomorrow & he will
follow up because she really should have the upper GI.
The fear of all the docs is that she has an obstruction that is just not showing up on x-ray.
The fever problem is over for now. Her brain is now not regulating her
temp to be high enough!! Her temps for the past few days have been around
94 - 95!! If she gets cooler they will have to put her on a warming blanket.
Tomorrow we go over to Opthalmology to have a test for the brain
waves to the nerves of the eye, to see if her brain is sending messages for her to
see.
I think she can see, at least a little or at times. Cortical blindness can be sperratic
and can also result in vison in only certain lobes, or seeing like swiss cheese.
She had another 24 hour EEG with the video camera taping her for the
24 hours, looking for seizure activity. So far I haven't heard from Neurology with the results.
Emmie's pediatrician called to check on her again today and he started crying. He loves her too.
It's sad to see her this way. We all miss her laugh and her smiling face.
Big day tomorrow with the vision test and hopefully some new GI info.
Thanks for praying !!
kim
Tuesday, October 01, 2002
It's 2:30 AM and she has been vomiting since 3 this afternoon. The docs over here think it may be withdrawal, but they are ready to do an x-ray. One of the docs I know from last year said she is throwing up bile, and it may be an obstruction.
They also think she may be having seizures (the thrashing & tensing movements she has been doing that the other docs said is "probably" brain damage related). They are planning another EEG.
A woman from I.V. team came & got an IV in ONE STICK !! A miracle !! Last time was 19 sticks !! So now she is getting fluids she needs - she is dehydrated.
Poor baby - she is so wiped out. Thank you for praying for her.
kim
Thursday, October 31, 2002
Well, there is a rumor of us going home TOMORROW !!! They are juggling meds & changing some IV meds to PO (by tube) & adding some heart meds. One of the meds they are adding is to lower blood pressure, which has been pretty stable, but it also helps the heart to not have to work so hard. They think this will help keep her heart stronger & hope it may lengthen her life a little bit.
Her heart is stable now, but it's still very sick. Her finger looks MUCH better today, so they have changed IV antibiotics to liquid (in the feeding tube), She can't drink liquids at all, because she aspirates right into her lungs. She has a very limited diet, of only soft foods, and she tires quickly from eating, so she will remain on continuous NG tube feeds for the bulk of her nutrition.
Please pray about Kira's schoolwork ... it's all been lost from our laptop hard drive dying, and she had started back in August, so it was quite a bit of work. And our computer at home is also broken, so she won't be able to do school even once we get home. Please pray that God will show us another way of handling the school issue. Her entire curriculum that I have for her is for the computer.
So, the final word we are waiting on is the surgeon's. If he wants to do something soon about her obstruction, we will be staying longer. But if he thinks she should wait, and if Emmie remains stable with the new meds, we may be heading HOME !! Emmie is looking forward to church !! (and so is Mommy) God bless ...
kim
Wednesday, October 30, 2002
Well, the GI doc was up today. She has been waiting for a particular surgeon to get back from out of the country. This surgeon has operated on 8 children with Emmie's syndrome who all had serious heart problems AND a malrotation problem. He did the malrotation surgeries on all of them. These are the only kids known other than Emmie who have the malrotation / obstruction problems and her syndrome. That surgeon is now back and we are waiting for him to see Emmie. He may decide to try surgery even if the vomiting doesn't start again soon. They are worried that she will end up with another serious infection the longer she stays here. Either way, they plan to surgically place a G-tube (feeding tube directly into her belly) before long. They pulled the NJ tube going down into the jajunem yesterday, and as of midnight last night she is up to full feeds in an NG tube into her belly, like the one she used to have at home. So far she is tolerating it, although her belly is distended. We are all kind of hoping she will obstruct again soon so they can go in & see where it is & fix it right away.
Her finger seems to look a little better, although her nurse today could hardly believe me on that one (it's pretty gruesome looking). And VERY painful. They want her to be on IV antibiotics for several more days, and then oral antibiotics. The finger & antiobiotic situation will determine if she can get out for church this Sunday. She has not had a fever for a day now, praise God !!
But still blood in her urine & low hemoglobin. The hemotology docs are watching that closely. Considering all she has gone through & still is, she looks GREAT !! Almost back to herself !! All the docs & nurses are in amazement !! All the glory goes to GOD !! I will try to get back on this computer when I can, to update everyone. It's sometimes a battle to get on. You would think they could add a couple of computers for parents to have some kind of contact with the outside world. Pretty isolated here. Peace,
kim
Monday, October 28, 2002
I will try to type everything fast ... it's my turn in line for the computer and grouchy people are waiting heehee .... She still has blood in her urine, low hemoglobin, fevers, bleeding gums & nose, breathing fast, and all the GI problems. The docs have no clue.
A doc from Hemotology was up today to tell me that her red cells are being destroyed faster than normal, and her bone marrow is working harder to try & compensate. They are not sure what kind of blood disease she has, and it's hard for them to know, because of all the transfusions she has had lately.
The cardiologist told me tonight that her heart is stable for now, but that it is FAR from repaired. The right side of her heart is still very sick, and they don't think the muscle is strong enough. Her prognosis is still poor. She still needs a miracle, even cardiac wise.
I asked if she could get a day pass Sunday to go to church - I thought I was joking, but he said he would try !! We need to make sure her IV is ok - I will try not to get my hopes up - but she may actually get to visit church!! I know that would lift her spirits !! They are saying there's a good chance she will still be here for her birthday, which is on Thanksgiving. (GRRRRRR)
My laptop has crashed, and the hard drive was destroyed this time ... everything was lost on it - including all of Kira's school work !! And all of the Emmie updates - I was saving them to have like a diary for her - she needs it!! Especially the days that were so bad and God healed her !! Thanks for continuing to pray !!!
Kim
Sunday, October 27, 2002
Fevers still staying up around 104 ... Her infected finger looks worse ... ortho was up tonight & said the hand surgeon will be up to look at it tomorrow & definitely will have to do "something". At the very least they have to cut it open again. He's not sure yet if it's the infection in the bone, and we hope the surgeon will know.
They are going to draw blood again in the morning to check her hemoglobin & other stuff ... she has been bleeding from her mouth a lot tonight. And now her nose as well.
They are also checking urine again for blood (it has tested positive for blood every time & they don't know why.) Docs are stumped. The general surgeons are considering operating even before they find the source of the obstruction. They are worried it could obstruct again & become an emergent situation. They may go in & try to find out what they can that way.
I know God has a plan - He is working. He's going to heal her & all the glory will go to HIM. I just have to be patient. (is it still considered being patient after 10 weeks, or is it just insanity now ??) I am just numb. Nothing at all surprises me anymore, because I honestly cannot believe the things she has been through the past several weeks.
PLEASE pray for wisdom !! It seems none of the docs have a clue about any one of the things that are wrong with her right now. Thanks .. God bless !!
kim
Saturday, October 26, 2002
Well, my laptop died again so I can only get online when no one else is here (only one computer for the entire floor!)
At 2 AM orthopedics finally came, woke us up & looked at her finger!! He said he needs to have his senior attending look at it, so at 9 AM they took her in & CUT her finger open (the whole end of her little finger - I watched) ... Then he packed gauze inside it !!! They will leave the incision open until it heals and do warm soaks 3 times a day and IV antibiotics. They still don't know if it's an infection inside the bone or not, and won't know unless it doesn't heal & they have to look further & then operate. They also have no idea how she got the infection.
After waking her for the finger at 2 am, at 5 AM they put in yet another IV (always torture for her - she is now known by the entire IV team of CHOP & most of them refuse to even try to stick her). She needed an IV for contrast for the CT scan.
She then was woken again to have the scan at 8 AM - no results yet. They are trying to find a source for her fevers, such as an abscess. Her temp has still been around 104.
This morning another little girl died who we met & whose Mom I have talked with a lot. Her name was Samantha. Her Mom is Rachel. Samantha was 9 years old & had major heart problems & through all of the cardiac stuff she ended up with CANCER. She has had a very rough time the past couple of months. Thanks for praying for Rachel; she's having a very hard time coping. I never imagined so many kids die here. It's so sad.
So the theory on Emmie now is that she DOES have an obstruction, but it's intermittent, so we have no clue as to where it is, because we haven't caught a time where she was obstructed & did the proper tests right away to see. Thanks for the prayers !!
kim
Friday, October 25, 2002
Okay ... they now think that as a result of the obstruction, her bowel has ruptured & an abscess has formed inside her somewhere, so we are scheduled for a full-body CT scan at 8 am tomorrow.
And we just came from x-ray, where they took films of her HAND ... she suddenly has an infection on her right pinky - it looks AWFUL. The surgeons looked at it & they think it looks like something called "fellon" - an infection INSIDE the bone !! It's serious and would require surgery. They are on their way up to look tonight.
Her temp is not coming down any more with the Motrin. The lowest it has been all day is about 103. The docs have all said they honestly have no idea how all of this is happening or what is causing any of her symptoms, or if they are related or not. It seems that they couldn't be related, but they said now they won't even guess any more. Thank you for your prayers.
Kim
Thursday, October 24, 2002
That surgery she had to put in a PIC line ... well, that PIC line FELL OUT today !!! It was lying in her crib this morning. The entire day I waited for them to get her in to get another, but they never did. So she was without much as far as nourishment or fluids all day. Just her tube feeds which are at a very low rate.
Her temp is still running around 104 around the clock. It comes down to 102-103 with Motrin. Still no clue why the fevers. And still blood in the urine and low hemoglobin that is also a mystery.
Her cardiac doc told me today that one possibility is some weird disease that is triggered by moth balls, something else weird I forget, and also ... stress. And its seen only in Asians. I forget the name & wasn't near pen & paper to write it down. It was something with letters & numbers. It causes the body to stop making new blood. So apparently they will test her for that disease with the next blood draw.
Still no verdict about the GI stuff. So far she is tolerating feeds at a low rate with the tube that they advanced way down in the jajunem, past the stomach. They are hoping it is past any obstruction. But even if she tolerates full feeds like this, we still don't have an answer & they suspect she will get very sick again & don't plan to send her home for a long time.
The plan is to wait until she starts vomiting again & then do an emergency barium enema & scopes to see exactly where the obstruction is & what to do about it.
They let Emmie leave the floor tonight & the kids & I went downstairs to the auditorium to see "Monsters, Inc" - for a little while it was almost like we weren't here, although there were wheelchairs & IV poles & pumps beeping everywhere - but a very nice escape !! Her fever was way up then so she just slept on me, but she was content to be away from nurses for a while.
Please pray that things work out here with the other children ... what we really need is someone else around here incase I need to be with Emmie (they won't let Kira even sit in the playroom with them or walk Christian to the bathroom, even though she is legally allowed to - hospital policy). Someone to stay at the hotel with them at night would be ideal, but I'm sure it's impossible. Mark doesn't like to come all the way here & stay with them & then get up for work. There are nights that I have to leave Emmie to stay with them, because obviously I won't leave them alone in a hotel, and there is nowhere in the hospital that they are allowed to stay. Lot of stress doing this all alone. (well I am not alone I know - God is cetainly sustaining me).
So the plan for Emmie is to increase the feeds & if her fever goes away they will do an endoscopy and a colonoscopy. (poor baby).
Please pray for the fevers to subside so we can try to get some answers. They don't like to do anything when a child is febrile. Thanks for the love & prayers !! I am expecting a miracle !!
kim
Wednesday, October 23, 2002
She had the surgery. I didn't know until we got down there that she would go under general anesthesia and be INTUBATED again !! I figured sedation only - but now that I see she was able to be extubated, I am glad she was completely out, especially for that barium enema. So she now has the PIC line feeding her only the "hal" for now. This is fluids with electrolytes & sugar. No one seems to know why they are not yet giving her the lipids, which is pure fat. They usually are given together. She had a blood transfusion again last night. For some reason her hemoglobin is low. They don't know why this is either. They suspect something called "hemolysis" where the blood cells "burst" and she is not making new blood. There was blood in her urine, so they are supposed to check the urine again. The cardiologist told me this could be heart related. NOT good news if this is the case, as we thought her heart was pretty stable now.
Her temp is staying pretty steady around 104. I insisted on Ibuprofen (Tylenol does nothing for these fevers of hers) - they started the Ibuprofen & her temp has come down some. But still a low-grade fever. The barium enema she had gave them no info. They still have no idea why she cannot tolerate feeds. "Slow motility" is all they know. But they need to find out WHY. And no one knows if all of these new problems could be related or not. As of this morning, her lungs now sound junky and she has a pretty bad cough. Of course they suspect pneumonia.
The resident was in here around 7 AM & listened to her & said yes she's junky & I haven't seen him since, nor heard of what they may have planned. I was called into yet another "meeting" yesterday. Apparently that charge nurse was not pleased that I went over her head & Emmie's pediatrician called the cardio here & had her bed moved !! So they reminded me of all the "rules" and once again brought up homeschooling, and I referred them to Home School Legal Defense. They just can't understand WHY my other kids want to be here with me & with Emmie. I told them how I asked them if they would rather be home or at someone else's house & away from this place, but every one of them wants to be right here. They see Emmie light up when they come in the room - even they can tell that they are good for her !! I guess these people never heard of wanting to be with your baby sister when she is sick & you can cheer her up, and they never heard of kids wanting to be with their mom. They think there must be something wrong with them that they want to be with us. Sheesh if only everyone could feel the kind of love we feel for Emmie. I feel sad for these people who don't get it. But I just pray that this is also a witness to them.
PLEASE PRAY that this low hemoglobin is NOT related to the heart and is NOT hemolysis. And of course, for WISDOM for these docs. This is supposed to be the #1 children's hospital in the country, and they have FIVE teams of specialists working on her, and they can't figure this out !! God knows her & He knows all she needs, and all we can do is trust in Him.
Getting lonely here - Emmie would love visitors (hint,hint)
Please, please keep praying !!
kim
Tuesday, October 22, 2002
They have moved surgery up to NOON today (Tuesday). She now has some kind of discharge in her diaper - the cardio is calling it "starvation stool". She is very, very sick. I was told this morning that all of this could be life threatening. Good to know that GOD is in control. I honestly don't know how people survive in here if they don't know the Lord. He is ALL that is keeping me going. I am done. But He keeps me strong. He is so good. Please keep praying !!
kim
Tuesday, October 22, 2002
She spiked a 104 fever this afternoon. Then she started her "choreo movements" again. Docs are not sure what is up with all this, so they have done a ton of cultures and a chest x-ray. The last I heard about her x-ray was it had been "misplaced" so no docs saw it yet (can you say GRRRRR ..... )
They still have no idea what is wrong with her GI system. But they feel that the fever is NOT related. The cardio actually thinks the fever is respiratory. She is scheduled for surgery tomorrow. They have her in for 4 PM but are trying to move her up much earlier. They are going to put in a PIC line to give her hal & lipids. This is nutrition with calories going into her veins. Finally someone addressing nutrition issues. Infact they are very concerned about her nutrition. The attending cardio told me she is severely malnourished. They are also going to put in an N-J tube (feeding tube way down into the jajunem, past the stomach, hoping to avoid any blockage & get some feeds into her.)
The other things they plan to do are a barium enema, endoscopy, and colonoscopy. PLEASE PRAY !!! I have a friend who had these tests & she tells me the barium enema is painful !! They are hoping to do Emmie's under sedation, but that's not definite yet.
They drew blood tonight - several sticks just for blood samples - the only thing back on that so far is her hemoglobin, and it's low. She needs blood !! (I can't believe she was almost home !!) They also did a straight cath to check her urine. She is now VERY scared of anyone who enters the room. ALL she does is cry "No!! No!!" all day long. She is in pain and probably terrified of what they will do to her next. She has had a VERY hard day.
I have cried a lot today over what she is going through. It's so sad, and I really don't know how much more she can endure. I spoke with her pediatrician today, and he ended up calling the cardiologist & got him to tell the charge nurse to MOVE Emmie to a window !! (she has not seen sunlight in 9 weeks). So we are still in the same room, 6255, but now Bed 2. This side of the room also means that visitors for the roommate won't have to pass her. This was the bigger concern of her pediatrician, since she is immuno-compromised. Thanks for the prayers !! They sure are needed AND appreciated !!! God bless.
kim
Sunday, October 20, 2002
Emmie says enough already .... She has a Gastric Outlet Obstruction. She is in a LOT of pain. The obstruction is causing her stomach not to empty, which is why she was vomiting everything back up. However, she is still wretching (THREE DAYS STRAIGHT NOW !!) and the docs are not sure why. They are also stumped as to why the salem sump is now draning off bile. The bile should be moving out, and since it's not, that could mean yet ANOTHER obstruction down lower, besides for the one stopping her stomach from emptying. There may be a kink in the duodenum. We do know that there is a "duodenum inversum" which means her intestine kind of floats around instead of staying in one place, and this could cause it to kink over on itself as it floats around.
I just took her down for another belly x-ray, and the surgeons are going to be back in to talk with me (hopefully soon).
Either way, it looks like she is facing another surgery. The very frustrating thing is that, once again, it's a weekend, and nothing gets done. So she is lying here in all this pain, on IV fluids, wretching & gagging, and we wait for the people to come in who can help her. And they won't give her anything for nausea because it could "mask the symptoms" ... GRRRRR !!!!!
Besides for all of her pain, she just seems depressed. She knew we were going home, and now she is back here. And she's hooked up to so much stuff now that I can't even walk her around any more, so she's stuck in bed.
Poor baby. Nine weeks. I know she would LOVE visitors !!! She is very alert & aware now, and friends could cheer her up I am sure... 6th floor Cardiac Care Center .. everyone here knows us so just ask if you get lost ... Hope to see some friendly faces !! Thanks for the ongoing prayer !!
kim
Friday, October 18, 2002
We never even made it home. She was vomiting through the night and all this morning so I
contacted her GI doc over here before leaving & she had me page the cardiologist.
He took her right in at the clinic & admitted her to the cadiac unit again.
She had vomited all her meds through the day & she was dehydrated. When
we got her to the unit, I hooked up her pulse ox right away because she was
so blue by this time, and her sats were down to 70 !!!!! NOT good !!
She is back on oxygen again. No clue why her sats have dropped.
She is still vomiting, and its after midnight - about 40 hours now !!
They did an emergency upper GI which showed that her stomach is not
emptying. I am sitting here waiting for another x-ray at the bedside to find
out if we will be rushed into surgery yet tonight !! If there is an obstruction,
this means emergency surgery. There could be something like a partial obstruction,
which could still mean surgery, just maybe not tonight.
She is back on IV fluids with a salem sump instead of her NG tube, like the one she
had in the CICU, to suction out the stomach, although she is still vomiting even with this.
We are back in the Main Hospital Building, sixth floor, room 6255.
Please keep praying !! The kids & I were so looking forward to being home !! But we know
Emmie needs to be here & have all of this resolved. I think God just needs to show the GI docs a few miracles - He only got to the cardios & neurologists this visit so far !!
He is in control !!
Thanks for praying !!
kim
Thursday, October 17, 2002
We are officially discharged !!! We are staying at the hotel tonight because her loaner wheelchair should arrive tomorrow morning. She started vomiting again this morning, and has been throughout the day, but the rehab docs didn't know anything about her GI stuff, so they just let her go. I will have to get her in to the GI very soon. I just gave her the 8 meds she gets at 8 PM and she vomited them all up. Please pray for her feeding issues to be resolved. She is not taking much at all by mouth, so she really needs for these tube feeds to work. And this is the only way for her to get her meds, because she aspirates all liquids and cannot take them by mouth.
She has settled in on the bed by me & is sound asleep - something she hasn't been able to do in quite a while. Good to see her peaceful. See you all soon!! Thanks for the prayers !!
kim
Thursday, October 17, 2002
Well, still no definite as to when we leave, but it looks like it will be very soon. I can't believe this day is almost here !! I am not sure if we will remember how to just "do" stuff ... life kinda just stopped these past 2 months. It will be nice to just be home & sit in a comfy chair & relax. I can't wait to get Emmie home to sleep in her own crib again. We are getting very excited !! The vendor of her wheelchair was up today to asses her for a loaner wheelchair. It won't be molded to her body as hers will, but if he finds something close we may go home tomorrow !!!
The kids & I ran into many nurses who took care of Emmie when she was very sick, and they were so happy to see the way she looks now !! And we also ran into her cardiologist today. He had the biggest smile looking at her & said how absolutely amazing she is !!! He is really shocked !! He honestly didn't expect her to live, and now she is not only here, but smiling !!!! Praise God !!!! What an awesome witness to these docs who sometimes have so little hope, because all they know is the medical stuff. I am so thrilled that Emmie could be a part of God planting little seeds for all of them.
They let us have a home therapy pass today & I took Emmie home for a bit!! She was happy to see the dogs, but apparently we have no heat in our house. I need to find a time to call PSE&G but unfortunately it looks like it will have to be after I get her home, since I will have to be there for them. Please pray for this to be resolved. I can't bring a compromised baby home to a house with no heat !! GRRRRR .....
Her sats (pulse ox / percentage of oxyenated blood) has been dropping pretty low the past few days. She doesn't seem to be laboring to breathe at all, so I am not too worried about that, but it could be a sign of something brewing with the lungs. I am a little concerned about aspiration pneumonia, because they had been giving her a lot of liquids to test her swallow, and she aspirated all thin liquids. She now can only eat soft solids & thickened liquids (thickened with this disgusting chalky stuff - now that'll ruin the appetite no matter how long since you've eaten !) She doesn't quite have the hang of eating again. She sometimes forgets how to move the food & how to chew. I pray this will improve so she can get off of the continuous tube feeds & maybe only supplemental like she had before.
We will be coming home on 14 meds that are around the clock, including 2 AM, 3 AM, 5 AM & 6 AM & throughout the day. And Emmie gets sensory overloaded very easily from noise & lights. Also having withdrawal problems while weaning the drugs, besides for all the neuro issues.
Please continue for strength - I am sure we will all do much better once we are home & sleeping better. Thanks again for holding us up for so, so long !!!! God is good !!
kim
Tuesday, October 15, 2002
Well, I think I may have complained enough about Emmie's meds getting messed up & being brought in here late & Emmie not getting any sleep, (she can't even stay awake on the mat for her therapy sessions, she just falls asleep), so now the "doctor" tells me that we may go home as early as THIS FRIDAY !!!! Emmie will then be transferred to "Day Hospital" and I am trying to make that in Voorhees / Marlton. I will need to have her there daily for intense therapy, but we will go home at night. I am not sure if she has it on weekends or not. I am hoping she will be able to come to church !!
We are mainly waiting on equipment that she will need at home, like a loaner wheelchair until hers arrives in a couple of months, and a feeding chair & bath seat, before we can go home.
She is starting to eat a little bit. Still very shaky and can't sit, so she can't feed herself, but she seems to enjoy eating again. The first time I fed her she had a smile so big she looked like the happiest kid on earth !! Just wait till she can leave & get to church !!
I ran into her surgeon tonight at the elevator, and he was VERY pleased when he saw Emmie !! He asked me about her vision & I told him she seems to see very well, and he was thrilled !! He is setting up an appt for her with his team to see her this week. This is the doctor who sat with me before the last surgery & cried and told me they didn't think she was going to make it, and how he has grown to love her. I was so happy to run into him & for him to see how great she looks !!
If we are in church this Sunday, please don't be offended if I ask you if you have washed your hands (it's become habit !!) I think I may have lost all social skills, I am in constant Emmie-advocate mode haha - (she is immuno-compromised). Hope to see you all soon
kim
Sunday, October 13, 2002
Almost 8 weeks here now ... Where do I begin ... PRAISE GOD !!!!!!!!!!!! Emmie is now signing EVERY word she ever knew how to sign (many I had forgotten) ... AND ... she has been mouthing words, so I started telling her to say it loud, and last night she said "eat" (of course that was her 1st word !!) And tonight she said "eat" and I said later, sweetie, and she said "tay" (okay) !!!!! And she said "out" to get out of her seat, and "mommy" and "owwww" when getting her blood pressure taken, and "NO!!" to her brother !! (sounds like a normal almost-3-year-old !!)
Many words she still tries to mouth & can't get the sound to work at the same time. Her speech therapist from over at the other unit said that is where there is a connection missing from the brain, but since she is so young, even with permanent brain damage, other parts of the brain can take over that area. Amazing !! God is doing amazing things !!
Tomorrow is a very big day - she has her swallow study at 2 PM (PLEASE PRAY !!!) This is the main thing keeping her here - the feeding issues. I also plan to talk with the "doctors" here tomorrow & BEG them to sign her out for outpatient therapy. All that she is getting by staying inpatient is risk of sickness & lack of sleep.
One of her meds she has been on for weeks, the staff here is now saying that her feeds need to be STOPPED for ONE HOUR before & HALF HOUR after giving it !! It's given 3 times a day, so that means over FOUR HOURS of NO nutrition every day !!! And feeding was supposed to be her big issue !! The feeds were never stopped for this med by the cardios & it's a heart med. I asked them to contact the cardio & they would NOT !! I was told before we left there that I would be able to request a consult with them anytime. (pretty frustrating).
I just want to take her home. I think she is ready. The only effects I really see are physical. She still is very wobbly, but she is starting to have some good head control. She is at a newborn age level for motor skills. But cognitively I think she is there 100% !! She is even silly !! THANK YOU LORD !! I have my Emmie back !!!!
I tell her every day I am so happy she is still here with me !! I love her so much !! I am so grateful & humbled that God has chosen for me to be her Mommy !! And that He gave her back to me !! I missed her so much !!
THANK YOU THANK YOU THANK YOU to everyone who has been praying !!! Please keep praying about the feeding issues. I know it's a long road ahead for her still, but it's all good stuff now !! Healing & growing stronger!! God is so good !!!!
kim
Saturday, October 12, 2002
Well, we are now officially in Neuro Rehab at Childen's Seashore House. Things are different here - no docs around like on the cardiac floor. I have requested to give Emmie all her meds myself - they like that here, and of course I like it that way too.
We have a roommate, Tyler. He is 15. His mom is very nice & showed me all around today, since our nurse never showed for a couple of hours after we arrived (and all Emmie's meds were late because of this). Tyler was hit by a pickup truck while riding his bike. They have been here just a week less than us - 5 weeks in the PICU & now 2 weeks here so far. He has a long way to go, too. His mom's name is Carol & she is super !!
The entire unit here is kids with brain injury or spinal cord injury. Wow. I am not sure what is harder - Cardiac Intensive Care or this - at least here the kids are working on healing & getting lots of encouragement from the therapists. I am wondering exactly why they felt Emmie needed inpatient rehab - the therapists only work from 9 AM - 12 and from 1 - 4:30. No therapies the whole evening, and hardly anything on weekends, so I just wonder why they feel she needs to sleep here at night. I am pushing for outpatient rehab, so I can get her home to see her doggies and get to church - I think that will be helpful to her as well.
I was told tonight that there is something called a "Home Therapy Pass" - where she could possibly go home for a few hours - I was asking if she could ever get out to go to church & visit home for a bit. Of course they need to assess her over here & get to know her before they can think about that.
We did see one doc today. She was very nice, but also very negative about Emmie's progress so far - I really couldn't believe it. I think she has made amazing progress !! But the doc feels that she should be much further & doesn't give much hope of recovery. She believes Emmie will need a wheelchair for the rest of her life. Infact, she asked about the way our house is set up & if there are steps going into the house & if Emmie's room & a bathroom are upstairs. She said they will organize all the equipment & renovations we will need for the house (Satan just loves to put those negative things in our heads but we do NOT accept them !)
The other kids have said she is going to walk out of here - I am with them !! She may not be able to hold her head up yet, but 3 weeks ago the docs said she wasn't going to make it. She is a living miracle - with more yet to come !! She just needs God and time.
Please pray that a pediatric loaner wheelchair will become available for Emmie. Hospital or insurance policy (not sure which one) is that the chair is not even ordered until after we go home, and there are no loaners available now. She really wants to "go" but a stroller is not enough support. Please also pray for rehab to be a pleasant thing for Emmie -she seems to be in a lot of pain & cries a lot during therapy. She has a long way to go, but she has already come a very long way, and God is on her side !! If God is for her, who can be against her, right ??!! Thanks for the prayers !! God bless.
kim
Thursday, October 10, 2002
Well, we have all been praying & asking God for a miracle ... I believe He is answering !!! Yesterday morning, Neurology came up. I told him how she is now POINTING to her siblings as I ask her where each one is !! And she shows me her hand if I ask !! Well, he said that is great BUT she is not trying to speak or sign at all, and still not holding up her head, and he believes that is a result of her "severe brain damage".
Well, within an hour after he left, the girls & I had her SIGNING the words red, black, and please !! And by that afternoon, she was also signing eat (of course !!), drink, thank you, and more !! And today I went through EVERY word I could ever think of us signing (there were over 150) and as I said each word she SIGNED EVERY ONE !!! Her hands are still very unsteady & weak & don't go where she tries very well, but it was very clear that she was right on every one !! I honestly cannot even understand HOW she could REMEMBER these signs we haven't been using in 2 months - I have forgotten many myself !! And having "brain damage" ... IT'S A MIRACLE !! Her occupational therapist here said exactly that - this is a miracle !! The progress she has made in the past week is unbelievable !! It was believed she could be completely blind just a week ago. Now the docs are not sure to what extent her cortical blindness is, because she seems to see A LOT !!
She does still have a very long way to go, and maybe she won't get to where she was before, but she is GOOD !! The speech therapist / feeding team came up yesterday & again today. We tried having her drink from a cup, straw, and bottle, and she could do none. When I put water in her mouth yesterday she swallowed it, but baby food she aspirated into her lungs. Then today she aspirated everything - even the water & juice. So they made an appt. for her to have a "swallow study" on Monday. This will show if she will be able to take anything by mouth. The speech therapist was so impressed with her neuro improvement over one day. She said Emmie is "one of the most impressive kids I've ever met". (Yeh, I sure agree on that one !!)
We had an appt with the seating clinic today. Emmie was measured for her wheelchair, bath seat and feeding seat for at home. I was told that these will take 3 - 4 MONTHS to make !! Sheesh !! We are hoping to get a loner wheelchair to go home with, but it won't be molded to her body like hers will be. But at least it's something to get to church and the mall in - her 2 favorite places !! Once she gets stronger & bigger, they can put bigger wheels on the wheelchair so she can wheel herself, or she can get a motorized one, which is more likely, considering her heart condition. (But I figure she will be back to walking by the time her wheelchair arrives, at the rate she's going !!)
So ... the docs are so pleased with her & the fact that she is now tolerating her tube feeds that they are moving us to the Seashore House TOMORROW !! Her Neuro Rehab will consist of Physical Therapy & Occupational Therapy twice a day and Speech/Feeding once a day. We will be on the 3rd floor of the Children's Seashore House. I will send more info of our exact location as soon as I get it. THANK YOU for the continued prayers !! GOD IS GOOD!!! HE IS SOOOOO GOOD !!!!!!!
kim
Monday, October 07, 2002
Well, it's been a rough day. Emmie had her Upper GI with small bowel follow through. It took over SIX HOURS because her system was moving so slowly. The doc didn't see any obstruction or narrowing - this is not exactly good news - they were at the point of hoping it was something like that so it could be corrected surgically. Now they think it could be central, like her temps, and she may not even be able to be tube fed. Still planning to put in the Broviac Catheter (another surgery!) for a more permanent line for meds & nutrition, although she can't be on that type of nutrition for long, because it destroys the liver. The cardiologist said we will be here a LOT longer even before we go to Neuro Rehab.
Before all of this, the social worker confronted me about homeschooling the other kids. She told me that there were "laws" that had to be followed about schedules & times, and I said no, actually there are no stipulations for NJ residents. She said we are in PA now & have to follow PA laws. I was sure she was wrong, but I said I would get back to her after Emmies testing. Turns out she IS wrong - we are NJ residents & we are in compliance with the NJ statute on homeschooling. I spoke with an attorney with HSLDA (Home School Legal Defense Assoc.) and I was told that they have no right to question me on any of this, and the attorney is writing & faxing me a letter telling them that we are in compliance with NJ law and if they have anything further they can contact THEM. I just find it so hard to believe that they can give me such a hard time about things that have nothing to do with them - that are not even an issue. We have been doing school here. It's what we do. I told the social worker I can't believe she has the nerve to do this, when we have been here for 7 weeks and my child is now severely brain damaged & she has never once come to talk to me about that!! THAT'S what she is supposed to be here for !! Please pray for God to soften the hearts of some of the staff here, and I guess for my heart to be softened toward them as well. I am sorry to say, it's not LOVE I am feeling toward a few of them. When I look at Emmie & see all she is going through, and all the pain she endures, and how scared she seems, it breaks my heart.
I wish I had turned the car around when we arrived here & she said "No, mommy, no". I wish I had listened to her.
She needs prayer. Thank you that I know she is covered. Thank you for holding us up.
kim
Friday, October 04, 2002
Well, this vomiting has them all stumped. Including the GI Department. They say she is constipated and they want to give her enemas and drugs to help that. They want to do an Upper GI but they decided that at 7 PM on a Friday !!! GRRRR Now we may have to wait till Monday - and she is getting NO calories in the meantime !! They think there may be an obstruction, which would have to be corrected surgically, or it could be central, where her brain isn't sending messages to her intestines, like the fevers, and be permanent, in which case she won't even be able to have tube feeds. They were hoping to at least tube feed her if she won't ever be able to take anything by mouth.
They plan to put in a semi-permanent line, a broviac catheter surgically put into the vessel going into the heart, for her IV meds & nutrition. Looks like that will also have to wait until Monday at least.
We went to Opthalmology for that test today. The doc told me he cannot tell to what extent her vision is impaired, but he did say that he believes that there is a POSSIBILITY that it can improve, but no promises. I know for sure she can see at least some, or sometimes.
Today she POINTED to each of her siblings when I asked where each was !! She is very weak & shaky, but she definitely recognized each one !! A GREAT sign vision-wise, and cognitively. She also reached for a ball Kira had in her hand & tried to hold it !! I also asked her if the lady gave her a boo-boo on her finger this morning & I asked, "Where is your finger?" and she slowly held it up !!! Praise the Lord !!!
They still say she has had a stroke, and many other "hits" to her brain, and at least some will be permanent. They have no way of knowing to what extent she can improve, but they are not hopeful that she will ever walk, or even eat by mouth again. I will leave all that up to God thank you very much. :
I am able to get her out of her crib whenever I want to, and hold her, and she's been getting much better with the thrashing around. I can usually even calm her now !!
Things are improving medically ... baby steps ... we just have to get over this GI stuff now, and start neuro rehab so we can get out of here someday !! Emmie needs to see everyone she loves - she misses you all I am sure !! Love in Jesus,
kim
Friday, October 04, 2002
Well, she is on day 4 of vomiting now. She is getting Benadryl to help that. They just keep doing abdominal x-rays and moving the NG (feeding) tube in & out farther & doing another x-ray. But they don't think the tube is causing the vomiting, Nor a virus or flu or anything like that.
I saw her surgeon tonight over on the other unit. I updated him & he wants her to get an upper GI. She is not assigned to him anymore, so he doesn't get report on her. He said he is here again tomorrow & he will follow up because she really should have the upper GI.
The fear of all the docs is that she has an obstruction that is just not showing up on x-ray. The fever problem is over for now. Her brain is now not regulating her temp to be high enough!! Her temps for the past few days have been around 94- 95. If she gets cooler they will have to put her on a warming blanket.
Tomorrow we go over to Opthalmology to have a test for the brain waves to the nerves of the eye, to see if her brain is sending messages for her to see. I think she can see, at least a little or at times. Cortical blindness can be sperratic and can also result in vison in only certain lobes, or seeing like swiss cheese.
She had another 24 hour EEG with the video camera taping her for the 24 hours, looking for seizure activity. So far I haven't heard from Neurology with the results.
Emmie's pediatrician called to check on her again today and he started crying. He loves her too. It's sad to see her this way. We all miss her laugh and her smiling face.
Big day tomorrow with the vision test and hopefully some new GI info. Thanks for praying !!
kim
Tuesday, October 01, 2002
It's 2:30 AM and she has been vomiting since 3 this afternoon. The docs over here think it may be withdrawal, but they are ready to do an x-ray. One of the docs I know from last year said she is throwing up bile, and it may be an obstruction. They also think she may be having seizures (the thrashing & tensing movements she has been doing that the other docs said is "probably" brain damage related). They are planning another EEG.
A woman from I.V. team came & got an IV in ONE STICK !! A miracle !! Last time was 19 sticks !! So now she is getting fluids she needs - she is dehydrated. Poor baby - she is so wiped out. Thank you for praying for her. kim
Monday, September 30, 2002
Change of plans ... again.
We are now in the Cardiac Step-Down Unit (same floor as we were).
I guess they finally agreed that Emmie is not ready to have no docs around.
She has been vomiting almost constantly since early this afternoon. I think it may be from drugs this time - Kira heard the nurse ask the student who was working with her "did we just give her TWO of her Methadone??!!" - And then they went off to talk & the nurse went into the computer where they document meds, and then Emmie's flow chart was THROWN AWAY and they re-wrote an entire new one for the whole day !! Sounds strange to me ... and she has been EXTRA sleepy since. Hmmmmm
We have a very nice nurse right now - I remember her from last year. She remembered Emmie (of course) and has been taking extra special care of her. The docs over here are also much nicer & really listen - even told me that I know her better than anyone, so they WANT my input !! Wow - there's a change !! I think this will be a good transition for Emmie. She has a private room way in the back at the end of the hall - very quiet - they feel she needs to be far from all the hospital noise after being in ICU for 6 weeks. There is something called ICU psychosis, and they think the best way for her to come around & be more alert is to be in a quiet atmosphere.
So we will go to the Neuro Rehab at some point from here. They are still saying she has severe brain damage. I know she needs the rehab even if it's just to get her the equipment she will need & get her muscles to relax a bit.
We are in room 6258. Same directions off the elevators on the 6th floor, to the right toward Cardiac Care Center, then down the hall to the left. All the way down in the back. Phone # 215-590-6660.
God bless ....
kim
Sunday, September 29, 2002
Well, the more conservative docs are all away, so the plan is to send her over to the Neuro Rehab Unit tomorrow (Monday). The respiratory therapist is furious that they are sending her with her labored breathing, (which is his specialty), but apparently he has no authority. He said he won't be surprised if she is sent back soon.
Today I drove her around in the new hospital "vehicle" again - she just slept, sitting up. She hasn't woken up for about 3 days & nights. They are supposedly weaning her off of the Methadone, but she seems MORE sedated to me the past few days.
BUT ... Kira & I were with her tonight & she was grabbing at her face (voluntary movements - very good!) - and I asked her if it was itchy (tape on her face), and we are both sure that she was trying to NOD her head !! First time in over 5 weeks !! I do not believe that she has "reached her plateau" as the Neuro docs tell me. I believe she has much more to show us all !! Once we get her off these narcotics & out of the ICU setting, I think she will start showing us !! I will send more info of where we are as soon as we move. God bless all.
kim
Saturday, September 28, 2002
She is having some trouble breathing. The respiratory therapist suctioned her, increased her oxygen, and gave her nebulizer treatments, but no help. She is struggling.
They called the doc in (the "Fellow" whom she has been assigned) - he's the one who told me it was "just an illusion" when I told him she didn't look right a few Sundays ago, and within 10 minutes of that she coded !! So, that doc tonight tells me that he thinks she is ok and that I am just anxious about going to the rehab unit where there are no docs. (GRRRRRR) ... (the nurses and resp. therapist say she is in distress.)
The Cardiologist said that she wouldn't want her to go to the rehab unit if she is still like this. I hope she is around when it's time to make that decision. They have a bed for Emmie over there as of Monday.
Today it took 4 of us about 30 minutes to get her into a special stroller (she is constantly thrashing her arms & legs and she is very stiff). They let me push her around for a while. Hard to know if she enjoyed it or not - she doesn't really express any emotion. I miss her. Not really any other way to put it - I miss my baby.
I have heard some great things about the neuro rehab over here. I pray she responds to her therapy and that we have caring people surrounding her. God's will. Love in Jesus, kim
Friday, September 27, 2002
When I got to her bedside this morning I found out that she had had a pretty rough night (and the nurse didn't call me). Her sats (oxygen percentage) dropped and her heart rate & blood pressure were up and her temp was over 104. The docs were called in & they ordered an x-ray and increased her oxygen again. Apparently she was very "agitated" and they gave her Benadryl. (that's a new one).
Soon after I arrived she started vomiting again - this time with blood. Docs have no idea why she is doing this or why her sats are low, etc. They decided that she would go to the step-down unit for the weekend until she goes to the neuro rehab. I had her things all packed up & ready to move & they decided not to let her go. (the medical director of the hosp doesn't want her moved yet & I trust her). The other docs are ready to move her out. I don't see how they can consider her stable enough for rehab when her sats are dropping & she is on more oxygen than she was a week ago when they extubated.
God has blessed me with another Christian family across from us. Their son Nathaniel just had his 3rd surgery today. They have 6 children and homeschool. Their 1 yr old twins had twin-to-twin-transfusion syndrome, same as our first twins had died from. Nathaniel is 2 and a half - just 5 months younger than Emmie - and reminds me a lot of Christian - a real cutie !
I am heading over to Emmie very early, because they are going to try & get blood from her again ( tried several times yesterday morning & got nothing). She simply has no access left. And even if they find something, it collapses before they can get enough to test.
We are having a birthday party next week for a 1-yr-old in here. They are from Mississippi and they have been here for 6 months !! His name is Ty - please pray for him & his mom Val. She has another little boy at home who is 3. He & Christian are buddies (he has flown here a few times). Ty is very sick. (thanks for praying for him, as I know you guys will ! ) I will keep you posted. God bless all. Kim
Thursday, September 26, 2002
The neurologist was up again today. He says since the fevers are not infection related but from brain damage, this means only severe brain damage. The central fevers where the brain can't regulate body temp is not from a "little hit" to the brain. He thinks that she won't improve much from what she is now.
I had a tour of the Neuro Rehab today. Looks like the hospital rooms here but smaller. And no docs around, just nurses. Apparently they plan to send us over there early next week as long as she is stable. And her pulse ox has been dropping today & they keep increasing her oxygen. Her heart & circulation is supposed to be better than before but she is aparently going to go home on more heart meds than before & probably oxygen, too.
Today has been rough.
I guess I feel like I can't believe this is happening. Where is my sweet little girl I brought here ?? I remember when she was praising the Lord in church that last Sunday before we came here. I want to see her walk and laugh and play again. I want to bring her home. I know God must be at work in all this - I know He is - I guess I just wish I could see a little piece of it (don't we always). Maybe I do - because I would imagine she would be so afraid right now but she seems peaceful. Must be Him. He is so good. I know He will get us through this.
kim
Wednesday, September 25, 2002
This morning I was told they were transferring her to the step-down unit soon. This is good I guess, but a little upsetting, because I was told she would leave ICU when sedation was no longer an issue & she is just on the meds for "maintenance" (because she is withdrawing from them). So this means that the way she is right now is not from sedation, but from her apparent brain damage. (I am still not ready to give into that diagnosis, and the docs think I am in denial, but I tell them GOD can fix anything & she will be just how HE wants her to be).
Now tonight they tell me they decided this afternoon "not to decide" yet if she is staying in ICU or not. She is on a waiting list for the Inpatient Neuro Rehab. If the wait is a few days they hope to keep her in Cardiac ICU, but if it's weeks she will go to the step-down unit first.
They are still concerned about her fevers (she is over 103 tonight). The doc is going to try to get a culture early tomorrow morning through an artery to see if anything else shows up.
They still have not attempted to give her anything by mouth, and she is on continuous tube feedings. I have expressed my concern over this, and asked when she will be getting bolus feeds so her belly can empty as it should, and I was told they are keeping them continuous. Then they decided to increase calories by giving her a new formula that I told them we tried at home & it made her vomit, but they said they are giving it anyway, and sure enough, she has been vomiting again !! GRRR !!! They turn off the feeds for 30 minutes & put them right back on at full feeds. I asked the doc if he keeps eating when he's throwing up - he wasn't amused!! I just don't get their thinking sometimes !! They gave her virtually no calories for 4 weeks, now this !! And I am sure it hurts her, since she just had TWO open heart surgeries !! I went to the head doc tonight & told him I do NOT want her to get anymore of that formula & if they feel they really need to start feeds up again soon, I want them started out lower. He started them back at half the rate over the first hour. Into the second hour she is ok so far, just sleeping. The physical therapist came up today with a big mat that she put on the floor. I laid Emmie on it & we worked on rolling her over. She can do NOTHING on her own. Her head just flops all around, and she is still thrashing her arms & legs constantly (involuntary movements).
They think she will go home pretty much like this even after several weeks of rehab, but the rehab is supposed to help loosen her up a bit; she is very stiff.
I asked the case manager & social worker to look into the possibility of her getting some kind of OUTpatient rehab - possibly even in Voorhees. I think if she gets home & back to church & surrounded by familiar loving faces, that will be great therapy too !! They are looking into that, but they are pushing for inpatient. They are concerned that I am not prepared for her care, and that outpatient rehab will not be intense enough.
Please pray for GOD'S timing for her to move from ICU, and for wisdom for everyone involved in these decisions of where to go & exactly what will be best for Emmie, and an explanation for these fevers. (and continued peace for the kids & I while we are here with her & see her struggling like this).
THANK YOU for continuing to lift us up !!!
kim
Tuesday, September 24, 2002
They took her RA lines out today !!! She finally has NO lines or tubes going in or out of her !! Only the leads for monitors, pulse ox, and blood pressure, which are only stuck on. They think they still may have to get an IV in somehow, but for now she is a free woman !!!
Since she has no lines, I got to HOLD HER for the first time in 5 weeks today !!!! The nurse found a rocker for me (there are only 3 for the whole unit) and I sat & tried to rock her for a bit. She has no head control and is doing constant thrashing motions, so it's kinda hard to hold her.
Her fever spiked way up again this morning and she was vomiting again, so the nurse called me at 5:30 this morning & I ran right over. (If I was almost 3 and sick, I would want my Mommy). They don't know why she has been sick to her stomach. It could be from the new meds they are transitioning her to, or it could be from the withdrawal from what they are trying to wean, or reflux, or even more from the brain injury.
On Sunday they were talking about giving her Haldol for the thrashing jerky motions she has, and they were hoping it may even help with the fevers, since they think they are caused by her brain not regulating her body temp. They wanted to consult with neuro first before giving this to her (it's rare for them to give it), and I haven't heard anything else on that yet.
The plan is to get her stable and to a point that they are happy with sedation, and then they plan to transfer her to the Seashore House attached which is attached to the hospital here, for her intense neuro rehab. The docs say she may never eat by mouth again - or walk - or talk - or sit - or hold her head up. But they really have no clue yet, so I don't know why they even say things like that. Only GOD knows.
Come and visit her whenever you like ... she is awake a lot now & she sticks out her tongue & gives big belly laughs (whispers) !!
Love you all ... God bless !! kim
Monday, September 23, 2002
Today we were blessed with a pretty much uneventful day ! A very nice change !! The only problem we had was trying to get an IV in, and the docs called on the "big guns" - the best from the entire hospital on the IV team. He only stuck her twice and then gave up. No more 19 sticks like last week !!
The docs plan to remove the RA (Right Atrium) lines (going into her heart) tomorrow. They said there is a good chance that she will bleed and need another transfusion, so they will have the surgical team there with a kit to do an emergency line (the one where they cut & go into a large vessel). They may need to do this because once they pull the RAs she will have no access. Most likely they will need to get a line in anyway, because her electrolytes have been dropping several times a day & she has been getting them through these lines. Please pray that they can get into a vessel easily if needed !!!! Once they need to get a line, the docs will keep sticking her & digging until they get something, even after 19 sticks !!!
Her hemoglobin was low again today, and she is getting another transfusion tonight. A friend I met here last year came to visit today. Her son is 4 years old. He has "100% brain damage" and cortical blindness from complications from one of his heart surgeries; similar complications to what Emmie has been through the past 5 weeks here. He is outgrowing his special needs stroller, which cost $3,000, and his mom said she will give it to Emmie. What a huge blessing this will be !! I am not sure if our insurance would have covered this. The seat tips back on an angle and has head & trunk supports that she will need to help her sit upright.
Sometimes I get very sad thinking of how far she had come in the 19 months she had been with us, and how she was actually walking !! But she has come through so very much these past weeks, and I just THANK THE LORD that they are talking about someday "going home" !!! Two weeks ago they had no hope for her. They told me she was not going to make it. PRAISE THE LORD that tomorrow I should be able to hold her for the first time in 35 days !!! GOD IS SO GOOD !!!! She misses church & all of you ! kim
Sunday, September 22, 2002
She is still spiking fevers. They have finally agreed to add Ibuprofen besides for just the Tylenol. They were hesitant to use this because it can cause bleeding in cardiac patients. The fevers have not lowered with the new meds, and the docs are pretty sure they are caused by the brain injury.
She has been awake a lot today, and she is smiling a LOT !! She was even laughing !! (just a tiny squeak comes out, but it's music to me !!)
Today they started transitioning yet another drug, by adding the new one before they weaned down the first, and she ended up getting over-sedated and stopped breathing !! They were pounding on her & gave her c-pap (the external ventilator). A couple hours after that, her blood pressure dropped very low, and every doc was in our room for a couple of hours fixing her. Once they got the pressure under control, she started vomiting. The docs now suspect she may have had some type of toxic poisoning from her Digoxin. Sheesh !! They have her pretty sedated again so I hope she will be able to rest.
I was told today that I will need a special needs carseat for Emmie when she returns home some day. They don't believe she will be able to sit up alone. If all goes very well with her recovery, we should be able to go home in 4 to 6 weeks. They think she will have about 2 weeks inpatient rehab, with physical therapy 3 times a day, and occupational therapy & feeding & speech twice a day, and hopefully insurance will cover intense outpatient therapy after that.
They still think she has cortical blindness. I thought she has been seeing me over the past week or so, but now that she is much more awake & alert, I have noticed that she looks "toward" me but not really "at" me. I suppose she could be following my voice, which is what the docs say, and they think she may see shadows. Today I made her laugh a lot, but only when I made funny noises or touched her, not when I made faces or played peek-a-boo. God is in control. kim
Saturday, September 21, 2002
Change of plans (just to keep me on my toes) .... The docs rounded this morning & together they all decided that the risk of the subclavean line is greater than the risk of keeping the RA lines in. The other line would have to be put very close to her lung, and there is risk of actually puncturing the lung & great risk of infection. SO ... they are keeping the RAs in for now and trying to transition all her meds to NG (her feeding tube). They are hoping that they can also transition her antibiotics to NG tube, as long as no other cultures come back positive. That way they will continue IV antibiotics until Tuesday, and if she is doing well enough, they can continue with oral antibiotics. She is still very agitated, trying to scream (there's actually a tiny bit of noise starting to come out !!) Her breathing still is very labored when she is awake, so they keep giving her sedation.
In between her "naps" when she wakes up I can sometimes calm her & even get a little smile !! What a blessing those smiles are !!!!
So the plan for the weekend is to keep her comfy and try to wean off some more of the meds ... we are down to only 11 meds now !! God bless ... kim
Saturday, September 21, 2002
She is really struggling to breathe tonight. It gets very bad
when she is awake, so they keep giving her more adavan to help her sleep. She
is extremely agitated and no one seems to know why. They don't think she is
in pain, but she is trying to scream at the top of her lungs (but since she was
intubated for 4 weeks she has no voice poor kid).
She has been gasping for air again, and they are not sure if she will be able to stay off the
ventilator. PLEASE PRAY !!!!
They pulled her pacer wires out today (for the external pacemaker). They were a huge risk of more infection. Tomorrow they are going to put in a subclavean line. They will cut into her chest just below her collar bone and go into a larger vessel. This line will be her new access for her IV antibiotics and all her other drugs. They are putting in this line so they can pull the infected RA lines going into her heart.
Two docs from Rehab came up today. They poked her & bent her arms & legs & said she will need several months of intense therapy. All the docs now are agreeing that she has permanent brain damage. Today was a
very rough day - for some reason some days just hit me harder, seeing what she is going through and looking at photos of her from before surgery. One of her docs was at the bedside & I asked him how much more damage he planned to do to my child. He said I have every right to be upset & even angry. She is so very sick, and only God knows what else, and she was sweet & happy & active & even WALKING when I brought her here. I wish I could take it all for her.
It's been another one of those days of all you prayer warriors holding us up. THANK YOU !!
kim
Thursday, September 19, 2002
She is still breathing on her own !!!! Struggling & setting off her alarms quite a bit, but still doing it !! She is still on oxygen of course. Her surgeon was in today & he said he is still very concerned about her. I expected him to be very pleased. He said there is danger of the patch in her heart bursting again and she is still very sick.
One of the lines going into her heart came back positive for infection, so there is fear of the infection inside her heart AGAIN. They can't take the lines out, because it's her only access for all the meds going into her heart. So once again she has an infected line into her heart.
He is also worried about her neurological status. She is off most of the narcotics, but she is still not responding to even me. She does calm when I speak to her or sometimes pat her back (usually hates being touched at all), but that's about it.
She is also doing some involuntary movements they are calling "choreoathetosis" ... which means related to injury of the brain stem. She can no longer sit, roll over, or even hold her head up. I pray that a lot of this is from being in bed for over a month & that it will improve with rehab. The docs and therapists are not very hopeful that this is the case, but only God knows for sure, and He has created her to be perfect however she will be. I just want to bring her home - whenever she is ready - no matter how long it takes. Thanks for all your love & prayers, as always. kim
Thursday, September 19, 2002
Well, they extubated today. She is off the ventilator and breathing on her own, with the help of oxygen. She is struggling to breathe a bit, but so far not as bad as last time they extubated. The ventilator is still at her bedside, on standby. Last time she looked fine for 24 hours & then went into respiratory distress. Her CO2 level in her blood gases is higher than it was this morning, but she actually seems comfortable to me - Praise the Lord !!! Even if she ends up having to go back on it, I am thrilled to see her relaxed & without that huge tube !! She must feel relief in that way, yet she is now having to use muscles she hasn't used in a month, causing a lot of pain, and her throat & nose are very sore so I am told. She is still thrashing a bit - particularly her right arm. They tell me this is a neuro thing - from the "brain damage". Either it is involuntary, or she is trying to do something & has no control over her muscles to do whatever she is trying. Tonight I would try to hold her hand when she did this, but she would keep doing it. But when I rested my hand near hers she would relax once she felt my hand. (awwwwwwww)
Please pray for the Crawford family. Their baby died today. Many many complications since birth about two weeks ago. This was their first baby & they were here from Mississippi & of course they are devistated.
Thanks, as always, for your continued prayers. Emmie is awake a lot now, so feel free to come visit her - it's boring here !!! God bless ... kim
Tuesday, September 17, 2002
We've been here 4 weeks today. I put a dust ruffle, pretty sheets & a comforter on her hospital crib today. Just something to make her feel a little "at home". She has the prettiest crib in the CICU (and of course she should !!) She is awake a lot now. Still not responding to us other than following with her eyes, but she is very aware of us being here. They are planning on trying again to extubate tomorrow. Her CO2 level is high tonight, which is a sign that she may not be ready to come off the ventilator, and why they have had to turn it back up several times, but they seem determined to get her off now. I just pray it's GOD'S timing and not what THEY want. She needs to be ready. I don't want her suffering like the last time they extubated and had to reintubate.
Please pray about the situation with the staff here. Too much to bother you all with the details, but it makes it harder being here to say the least. The nurses and doctors for the most part have been absolutely SUPER. Such a blessing. It's more the "leadership nurses" and other staff that are tough. Over very silly things, and it can get very frustrating. Thanks for the prayers !! kim
Monday, September 16, 2002
Another rough one today ... Her fevers were spiking all day & they had to turn the ventilator up MORE. Tonight she is in the drug-induced coma with the ventilator set high again because they had to fix her breathing tube and couldn't have her moving. The doc came to me tonight & said one of her cultures came back positive. (they have been culturing all of her lines daily). Up until now nothing has come back, and they have been saying it would be very bad if we got anything back positive. They do not want to be fighting another infection now, especially since she has been on major antibiotics for 4 weeks & apparently this would be an infection that is resistant to antibiotics. Well, the infection they found is once again in one of her RA lines (lines going directly into her heart). Now we wait & pray that future cultures come back NEGATIVE !!!!! And that the infection does NOT get into her heart !!!!! Four weeks we have been here now ... so they let me put some of her own bedding on the crib tonight. She is lying on a very soft fleecy blanket - I hope she is at least a bit more comfy. Thanks for keeping the prayers coming ... I am hearing plans of a birthday party for her in the CICU (and her birthday is NOVEMBER 28TH !!!) I do NOT want to still be here then !!! But whatever she needs ..... Thanks for holding us up .... God is good. kim
Monday, September 16, 2002
Well, we started out having a good day ... Emmie had one of our favorite nurses again, and she was being very silly & had Emmie SMILING like crazy !!! HOW a person could smile with that huge tube down her nose & throat I have no idea, but you know Emmie !!
The plan was to have her extubated tomorrow morning. She was doing great with the pressure support & rate turned way down; just enough pressure for her to breathe over the tube. HOWEVER, tonight she started having major trouble again. She went into respiratory distress - she was gasping & her pulse ox dropped very quickly. They woke up the head cardiologist who said to turn the vent way back up. No way she will be extubated tomorrow. They have no idea WHY she cannot get off this ventilator, and they are very concerned. There is a possibility that she may even have to get a trache (tube in her throat) ... and go home on it. They are not sure if she will ever breathe on her own.
Another concern is her fever. Her temp has spiked way up again as of this afternoon. She is once again lying with ice & cold compresses on her. They worry that she can't regulate her body temp due to brain damage, so they are careful trying not to let it get too high. Seems like we take a step forward & 20 backward. But I am still encouraged. I am sure now that she is not blind as the docs suspected, and after seeing a sign of that beautiful smile of hers after 4 weeks, that's all I need !! Thank you all for the prayers !!! kim
Saturday, September 14, 2002
It's 1 AM ..... Her fevers are still spiking. It seems the new drug they added last night is helping to settle her a bit - although tonight she has been needing it much sooner, and they don't give it to her because the plan is to get her OFF of drugs. So when it wears off she is thrashing all over the bed again. They call it "combative". This is from withdrawal from all the meds. It's scary with all the tubes & lines still in. They are very slowly trying to wean her off of the meds. The docs say it's going to be very hard for mom & for nurses with her coming off these meds after almost a month. They have also started weaning the ventilator. They may try to extubate (get her off the breathing tube/ventilator) over the weekend. Apparently they haven't learned their lesson yet about Emmie & weekends. The past 3 weekends we have been here, she has gone on the pacemaker, into emergency cath, then respiratory distress with a 107 fever, and finally cardiac arrest with a seizure & 108 fever !! She does not like weekends in here - I think it has something to do with missing church !!
So they are trying to get her slowly off of one thing at a time & see to what extent she supposedly has brain damage. She seems to recognize my voice but does not seem to be able to see. They think those couple of times she seemed to track, or follow with her eyes, are a sign that she has cordical blindness. (BIG thing to pray about)
If the fevers are related to brain damage, this could be very dangerous. Her body could get back up to 108 and she could die. Infact they are all AMAZED that she has survived all these extremely high fevers. I see God working miracles !! The other kids are handling all of this so great - I am so blessed !! They are real troopers hanging here with me day & night. They think they are on vacation !! And Christian thinks the elevator in the hotel with the glass wall going to the 18th floor is a carnival ride - we must be at Disney !! God has really blessed me with GREAT kids !! As always, thanks to all you prayer warriors !! Love ya ... kim
Thursday, September 12, 2002
She has started spiking fevers again. And her blood pressure is going very high. The docs don't want the systolic (top #) to be any higher than 130 or the patch in her heart could burst, and she got up to 195 a few times today. They tell me there is proof of definite permanent brain damage. And they have found no new infectons to explain her more recent fevers, so they are thinking that the fevers are thermal dynamic, that her brain is not able to regulate her body temp. They added another drug today - I think that makes 24. This one is to help relax her & hopefully wean her off of the versed eventually. They say it should take several weeks just to wean the drugs, and then begin recovery. This, of course, is once they get her stable and eventually off of the ventilator. No talk of that for now. They put a type of braces on her feet today to try to help with the "posturing" she is doing with her feet (bending them a certain way which is a sign of brain damage).
I forgot to mention the set-up for her EEG yesterday ... the tech had to make marks all over her head & in the center of her forehead he made a cross, which I thought was pretty cool - and then he made another on each side - 3 crosses on her forehead - then he hooked up the lines but left the middle one empty, because, as he said, the middle cross is a guide. AMEN !! I thought that was pretty cool !! I am walking by FAITH and not by sight ... thanks for continuing to hold us up !! Today was very difficult. Love you all .. kim
Wednesday, September 11, 2002
It's 10:30 PM Wednesday ... Well, she has now graduated to a video camera constantly filming her & permanent EEG (lines on her head monitoring brain activity). They believe she is having many seizures. I think she just wants to be a movie star !! The docs are acting like she has severe brain damage - treating her like it. The cardiologist asked me today to talk to her & see if I see any signs at all of her trying to respond. They all stood there waiting & watching as I talked to her, but nothing. But she is still my sweet Emmie & God will heal her to be exactly as HE wants her to be - she is PERFECT - just the way GOD intended. I told them to stop telling me I am not taking home the same little girl. She IS still Emmie !!
She still has the chest tubes in draining blood - she NEEDS BLOOD !!! She's still getting transfusions. I was told she got "a ton" of blood in the operating room & she's still going. Her blood pressure has been rising a lot since surgery - they have been playing tag with it for over 24 hours now. They think there is a possibility that the elevated pressures are showing when she has seizures. She is still in the drug-induced coma, but they let it wear off now & then to check for brain activity. Still on life support ... same old stuff for her.
But guess what she did tonight for her mommy ... during one of her "awake times" I held a balloon over her head & moved it around & SHE FOLLOWED IT WITH HER EYES !!!!!! PRAISE THE LORD !!!! I tried again tonight but she didn't respond (the docs answer to this is that she has "cordical blindness" which can come & go, so she may see for a minute & then be blind again ... such negativity - I just cover Emmie's ears when they talk now !!) They all think I am nuts, but wait until she has total healing & we are praising God & giving HIM the glory !!! Still in a very critical period for the next several days or even weeks. They keep telling me we will be here for at least another 8 to 12 weeks. Well, I will take it - that means she is recovering !! That's how I will look at it.
One big concern is how weak the patch in her heart is. It has now been put in & replaced in less than a month and the tissue is very weak. If this bursts again, she will most likely go into cardiac arrest again, and the surgeon says he will probably not do anything else for her - she has been through enough and there is nothing more he can do.
Her heart has been doing some crazy stuff again, but not quite as bad as after the surgery a few weeks ago. They just don't want it doing anything crazy at all, because it is so weak now. So they are watching her very closely and monitoring her pressures & giving medications to keep things under control. Her lips are still pretty pink - not quite as good as last night, but still pinker than before. THANK YOU for your continued prayers !!! She will someday be thanking you all herself with that beautiful smile !!! Love in Jesus, kim
Wednesday, September 11, 2002
Surgery was NINE AND A HALF HOURS LONG !!! The surgeon replaced EVERYTHING inside her ... everything that has ever been put in !! He said she had a LOT of surgery. He also cultured everything to see where the infection is. She had major bleeding issues. The next several hours & then days are VERY critical. Just before surgery the surgeon met with me & he actually had tears as he told me the risks & what he expected. He gives her virtually no hope. He is "very, very, very worried" that she will not recover. She is facing a LOT !!
I asked what if she just happened to bounce right back from this & astound them & he said then she will still be in the hospital for at least 8 MORE WEEKS !! Just her feeding issues alone will be a minimum of 8 weeks. The lining of her stomach is breaking down. She is very sick. And on even more meds that she was after this last surgery 3 weeks ago - (and she had broken a record of 21 meds then !!) BUT ... now let me tell you what I feel ... sometime near the end of surgery, when it looked really bad & the nurses were very scared, I was completely filled with such peace - not that she was going Home, but that she was being HEALED !! And tonight I looked at her beautiful face (although very swollen again) and I yelled to the doctor that HER LIPS ARE PINK !!!!!! I have never seen her lips this color ever !!!! It looks like she is wearing lipstick !! This would mean that the blood is getting to where it is supposed to go !! (docs say it's probably temporary) Just a tiny observation by "only a mom" and I know she has a very long road ahead of her, but I believe in my heart 100% that she is going to bounce back from this !! I wasn't so sure the past several days, but I am believing in healing for her weary body. She was on the heart/lung machine for SEVERAL hours. They tell you that 2 hours on it is high risk for brain damage, and she was just on the machine 3 weeks ago, and this is her fourth time on it, so her risk of "further brain damage" is very high. One doc pointed to her photo & told me I will not be taking that same little girl home. I corrected him & said she is still the same little girl - even if she is a little different. She is still my Emmie !!!
I just want to hold her !! I haven't held her in 21 days. I miss her voice. I keep playing videos of her because I forgot what her voice sounds like. I miss her so much. Just not the same staring at her in a coma. She is still having internal bleeding, being drained with TWO chest tubes now. They replaced all the lines & wires in her, including the pacer wires & RA lines that go directly into her heart from the outside. She is also in the drug induced coma on life support of course. So far tonight (this morning now it's after 1 am) she is not on the pacemaker. I believe she will stay that way !! But they have the machine on the foot of her bed, waiting. She has a lot of fluid to get off of her, and she needs for the bleeding to stop. She also needs to get strong so they can wean her off some of these drugs. Please continue to pray for a miracle healing - all for GOD'S GLORY !!!! Thank you for holding us up with your prayers !!! We are blessed !! kim
Monday, September 09, 2002
They just took her down for CT scan of her brain, chest, abdomen, and pelvis, to see if there is anything they may have missed, like an abscess somewhere. She is on the O.R. roster for TOMORROW. I don't have a time yet. They are going to go in & cut out the infected parts of her heart & the infected hardware that's in it and replace that. This is a last resort. I am a little concerned for my other kids, mainly while she is so critical. I am at her bedside all the time now, and they can't always be, obviously. I NEED to have them HERE WITH ME, and they need to be with me, too. I just can't always be right here - it's like they need a nanny. A Grandma. But I need them here at the hospital. Any suggestions are appreciated. I don't want them to be away from here. I dunno. They tell me they are fine with the way things are. There is a Child Life worker here but only certain times. They want to be here with me, and I feel that's where they need to be. They think she got another "hit" last night to her brain. The neuro came & examined her this morning & he "tickled" her eyeball & she had no response. The docs are making sure they keep telling me she is not the same little girl who came in here. But I honestly don't care about that - I just want my Emmie - whether she is different now or not, she IS the same little girl I brought here 3 weeks ago. I have been speaking to her body, because she can't. I am believing in a MIRACLE healing for her - all for GOD'S GLORY !!!!! He CAN heal her - and by HIS stripes she IS healed !!!!!! In Jesus' name !!!!!!!
kim
Monday, September 09, 2002
Tonight around 9 PM she arrested. (cardiac arrest).
Her heart rate got up so high that it just stopped. No pulse. No heartbeat.
The doc did chest compressions to get her back.
My little Erica had stayed with me & we had sat at her bedside ALL day until
the very second before this happened. Erica smelled popcorn so we went to the
vending machine in the hall to get some. When we walked back in after about
2 minutes they were running everywhere and wouldn't let us in. They
called for the surgeon STAT and respiratory STAT. Very scary for me and I can't
imagine Erica, only 9 years old. I thank God that He led us out at the perfect time.
One awesome thing is how quickly things were taken care of for Erica
& I - they made sure there was a social worker by me & Child Life here for
Erica talking & finding activities for her. I also found a mom who prayed
with me. God is good !!!!!
After her heart stopped she had a seizure & bit her tongue. When they let
me in to see her she had blood all over her mouth and a big (thing) in her mouth
to prevent her from biting down again. They were able to bring her "back" and they are literally standing at
her bed all night. They don't know why she arrested, so she very well may do it again.
She is once again paralyzed, and of course on life support, with drugs beating her heart for her
and the ventilator breathing for her. Her fever earlier was up to 107.6, so she is also back on the cooling blanket.
There is no plan yet, other than keeping her in the coma and watching her.
I am praying God's will.
THANK YOU for the prayers.
kim
Saturday, September 07, 2002
Well today the Infectious Diseases docs isolated the exact bacteria that is causing the infection inside her heart. It is staph ... staph epi to be exact. (epi as in epidermis, or skin). It is a bacteria that lives on the skin. If anyone finds any info on this I would LOVE to hear. As a mommy I would like to know HOW she got this !! Her cardiologist from Deborah Heart & Lung Center called this morning to check on her & he said yes, he wants to know HOW she got it also, and he said they will tell me that "these things happen" but he said that is NOT acceptable. (And yes, they have been telling me "these things happen" already).
They started a new antibiotic today - "Rifampin". This is being used in combination with the one she has been on since surgery almost 3 weeks ago. They are giving it 72 hours to work. If she doesn't show any improvement in 72 hours they are discussing going in & removing ALL the hardware she has - it's ALL infected. This is everything she had put in in Korea, all the stents, coils, conduits, the patch, all the hardware put in at this hospital - everything !! If the antibiotic does seem to help, she will have to stay here in the hospital for at least another 6 weeks on it intraveneously. Another 6 weeks here & that is best case scenario !!
The "trophic feeds" they started last night have been stopped. They were only giving her 5 CC per hour and she couldn't digest that !!! That's like a drip every 10 minutes. It's now been 3 weeks since she has had anything to eat or drink. IV fluids to maintain but she is losing even more weight.
She got more blood today. Now all of her directed donor blood is gone. And the overall blood supply in the blood bank is VERY low. And her blood type is rare. B Positive. Anyone who can donate B Positive, PLEASE let me know !!! (609-980-2240).
She is very uncomfortable today (since yesterday really). They give her a bolis of versed (sedative) & she calms down a bit for about an hour & then starts thrashing all around her crib again. She completely exhausts herself but it's like she can't control it. They don't know if this is pain, or if it's neurological. She seemed to look at me 3 days ago, but hasn't since. The docs are thinking maybe we just thought she looked at me. She doesn't respond to me at all, but she does calm down when she hears my voice,. so I know she does recognize me to a point.
They have weaned down the Fentanyl (the one that's 100 times stronger than morphine & she's addicted to) and we hope to get her more alert over the next few days. This will help to determine if her brain damage is permanent or not. They are very concerned about this. There is even talk of us having to move into the Seashore House (attached to the hospital) for rehab after she gets through all of this. That all depends on to what extent the brain damage is.
Emmie's oldest sister Kira found a really neat site ... if you go to www.chop.edu/ecards you can make Emmie a card & they will deliver it to her right here to her bedside !!! This would be great visual stimulation that we are supposed to be working on !!
Thanks for the continued prayers .. they are really holding us up !!! God bless !!!
kim
Friday, September 06, 2002
I sure am glad you guys are praying ... things are so tough here right now. They called Mark out of work today to come & talk to us. There IS an infection inside her heart for sure All through her blood. This is deadly. All the cardio could tell me is that he doesn't think she is going to die within the next 24 hours. Everyone is very stressed about all of this - I saw a doctor throw something last night in frustration over trying to get a new line in her because they had to pull everything since all lines are infected from the blood infection. Then they spent 4 hours trying to get another line in. They are upset with each other & each seems to have a different opinion about how to handle things. Infectious Diseases docs want ALL lines out but cardio wants to keep the RA lines, which are going into her heart. So for now the cardios win & they stay. The surgeon wants to go back in & remove all infected areas & the others don't want to touch her. Very frustrating.
In our "meeting" today I was confronted on a few issues such as the fact that I am always at the bedside & may get "in the way". This has NEVER been an issue & I always JUMP out of the way whenever docs or nurses are coming to the bedside. The cardio spoke up for me & said mom is ok & the nurse was stressed who complained - thank goodness he was there !! Also brought up was if I was homeschooling the other kids & when I was doing this, as school should have started. This obviously is not anyone's business here when we start our school year, and the law does not say I need to start at any particular time, although we have started already anyway. It's very lonely feeling here. You feel like you can't say anything to anyone. You spend 12 hours with a nurse caring for your baby & you bond with her & share your fears & concerns & next thing you are in a meeting being told you are in the way or too stressed. I don't see how we will survive another 2 months in this place. Only by GODS GRACE. It's so horrible. Sorry to sound negative, but I haven't been given anything else today. She has BLOOD being suctioned out of her lungs now several times an hour, and they have started "trophic feeds" - not for nourishment, but because the lining of her stomach is breaking down. They also told me I have to take the "papers" down off of her crib ...These "papers" are photos of her siblings & verses I wrote down for her. I was told they are distracting to the nurses. Then they tell me she needs visual stimulation ... can't figure this one out at all !!! GRRR! Emmie's pediatrician came to visit today - he got back from China last night - he was very upset to see what's going on with her. You know how sweet she is & everyone is in love with her - it's hard seeing her so sick. Well, we will be here for a loooooong time ... would love company !!!
Wednesday, September 4, 2002
Well they are now suspecting that she may be BLIND.
Neurology was up today & said they can't tell yet the extent of brain damage or if she is blind. There were several things that could have caused it ... the 107 fever, the night she crashed and pulse ox was very low for 7 hours, and another open heart surgery on the heart lung machine. Each of these things in itself is dangerous, and she had all 3 within a week.
Also, she was seen by the Infectious Diseases docs. They fear she may have an infection in her HEART. This is very serious. They are stopping all antibiotics to see if anything grows on the cultures. If her fever spikes up again they will treat only the fever, with Tylenol or Motrin, but not give her antibiotics until they get cultures back to see precisely what infection she may have. If it's in her heart, it's very serious!
In the cath lab they coiled off 3 collateral arteries, but the hole in her heart is much larger, from some sutures breaking. This will have to be repaired. They are hoping she will be able to be weaned off the ventilator and be ok for a little bit without the surgery. We do know she needs another BIG surgery - we just hope she will be ok for now without it, because she is very weak to be going back into the O.R. right now. If they can't get her off the vent, like this weekend when she got very sick, they will have to do the surgery now. I am told they may start trying to wean her off within the next several days.
My laptop died so I will try to get on this hospital computer when I can to send updates.
Thank you all for praying. The nurses here tell me I am so strong & handling this so well, but I know it's not me - GOD is sustaining me. HE will get all the glory when Emmie comes home !!
kim
Sunday, September 01, 2002
This poor baby ... Now there is trouble with her kidneys !!! Also hemoglobin & platelets are low, so she's getting more platelets & another blood transfusion. I was braiding her hair tonight & found a HUGE bed sore across the back of her entire head !!! They are now ordering her a special mattress which will supposedly take DAYS to arrive !!! GRRRRRRR Apparently she is at risk for sores because not only is she lying for so long, but also her cardiac output is very poor. I have been turning her very often & placing gel pillows under her pressure points, but overnight if I am trying to get some sleep, it seems she doesn't get turned as she should. I guess I need to find a way to stop sleeping completely to keep up on these nurses sheesh !! She is still on life support and heavily sedated. The head cardiologist stopped in today (special for her) and he told me that they will do a cath on Tuesday to give her time to rest after the rough time she has had. In the cath lab they plan to TIE OFF that one collateral artery that they have been trying to tie in & saving in the hopes to use it some day if they could get to it. Sadly, it seems to be hurting her & they need to tie it off, leaving no chance of helping her lungs with that in the future. That was the one thing that they were hoping could maybe help her when her lungs really deteriorate. Also in the cath lab they will look at the hole in the heart that he made smaller during last Thursday's surgery. The belief is that the sutures have torn & the hole is too big, so that means going BACK IN to another open heart surgery on the heart/lung machine that they believe has caused brain damage.
I made more friends here over this past 2 weeks - Russ & Jill & 4 yr old Levi. Russ is worship leader in their church. They have been such a blessing & support to me - they were discharged today - bittersweet for all of us !! Happy that Levi is well enough to go home, but very sad that they are leaving.
I heard that the entire church prayed for Emmie this morning. We felt it !!! THANK YOU ALL !!!! kim
Saturday, August 31, 2002
Things have taken a huge turn for the worse. Today (Saturday) around 3 pm, she started going downhill very fast. She was gasping desperately for each breath, very blue, high heart rate & blood pressure. They tried pushing all her meds way back up again, but to no avail. They also tried a "non-invasive ventilator" with has a mask instead of going down her nose, but that didn't help either. After SIX HOURS of her struggling this way, the head cardiologist came in & said she is failing & they put her back on the ventilator. Twenty steps backward as far as the road to recovery. And then her heart rate started going crazy again. They put her back on the pacemaker, and that didn't help. Then they called in electro-physicists, who would try to put something down her esophogas (which lays right behind the heart) to try & zap the heart with electricity that way. No help. Her temperature is now 106.7 !!! They believe this is not from infection this time, but from the heart working so hard & heat not escaping. She is once again being chilled but still at 106.7. They called her surgeon who is back in North Jersey, and the plan right now is to keep her heavily sedated on life support. They will do a cath to see if they need to go back in to fix anything surgically. The general belief by those who have checked her out real good is that she has also suffered some brain damage. Please keep praying. Things seem so very bad, but I know God is holding her in His mighty hand. She is so precious and He brought her across the world to be exactly where she is, and in all our hearts. Thank you so much for all your love, prayers & support. We are blessed. kim
... Almost forgot ... the big problem is the heart rate - its very irregular & in the 200's.
Saturday, August 31, 2002
Please continue to pray ... there seems to be "something" not right ... she is not trying to speak at all & not responding the way she should.
I pray that it's just from the pain & her being so weak.
Thanks for praying - she's still got a long road ahead - not nearly "out of the woods."
Love in Jesus,
kim
Friday, August 30, 2002
Well, she is off the ventilator !!! BUT ... we are not sure if she is going to stay off of it. She is having a LOT of trouble breathing. She is extremely blue and just gasping for each breath !! It's very hard to watch !!!
They just did a chest x-ray and are checking blood gases (which don't look good) to see if she needs to be back on the ventilator. PLEASE pray that she starts breathing easier !!!!! The docs believe she has pneumonia. You can hear the junk in her lungs with every breath. I sat her up to try & move the stuff in her lungs (she is way too weak to cough) and she couldn't even hold her little head up - she is SO weak. And she is absolutely exhausted.
They turned her pain meds down to almost nothing, and VERY quickly, and she is having WITHDRAWAL symptoms from them (narcotics 100 times stronger than morphine and she has been on them for 10 days). She is also in a LOT of pain - they won't give her anything else for pain because they want her awake to try to move the junk in her lungs & work on being able to cough. She is thrashing around in her bed wildly from the pain & they have now tied her down. This is very upsetting, especially since she signs to communicate & now she can't.
They moved her to another room (still in CICU). The number to CICU desk is 215-590-2644. If you ask for Emmie's room they will transfer you. They won't give me the direct # incase they have to move her again it's easier to call the desk.
The kids & I are at Penn Towers at night at 215-387-8333, room #1823.
My cell phone # is 609-980-2240 incase we are away from her room & have visitors (happened today, sorry) If I am away from her bedside, I will turn on the cell.
Please continue to pray about all the infections she has, and for her breathing - her lungs are in bad shape, and her heart is very weak, and for the pain and withdrawal symptoms. Too much for such a little person. But God can give her peace.
Thank you ....
kim
Thursday, August 29, 2002
Well, we had a couple steps forward & a couple backward also ... Last night I found out she has ECOLI in the urine. And today I found out she has yet ANOTHER infection - in the site in her groin where the central line was. They pulled that today & cultured it & it has "gram positive coxi" - we should find out tomorrow exactly what infection it is. The GOOD NEWS is that they weaned the vent down from 16 to 8. Her blood gases came back low but instead of turning it back up they did chest pounding & the numbers went up SO ... they turned it down to 5 !!! If she does good overnight, she MAY get extubated tomorrow !!!! One thing I have noticed over the past several hours & docs have confirmed ... "something" seems to be wrong ... the first part of today she was looking at me & nodding or shaking her head responding to me, but this evening she has been staring off in one spot & not even responding to light. She doesn't make eye contact, turn her head, or any reaction she should have. She just stares in that one spot. I know she seemed "there" after surgery, so I assumed things were ok as far as the possible brain damage, but they have been suctioning her breathing tube a LOT tonight ... and when they do that she has quite a long amount of time getting NO air. I don't know if this could cause any brain injury, but it's definitely something I am praying about ! I pray that she is surrounded by angels, and maybe she is just looking at them, or listening to her heavenly Father as He comforts her. She has lost a lot of the fluid she had on her ... she looks almost like my Emmie again !!! Now we have to work on getting her off the ventilator, and getting better & EATING because she has been getting NO calories !! And she was already "failure to thrive / malnutrition". The kids & I are now staying at the Penn Towers Hotel right across the street from Childrens Hosp, Room 1823. I can run back & forth in a sec, and I think I may actually get to sleep tonight. Phone # 215-387-8333. Emmie's room # in the hosp is 215-590-5065, room # 6227. I will keep you posted. Thanks so much for praying for all of these obstacles ... I know you are !! We can feel it !!! God bless you all !!! Kim
Tuesday, August 27, 2002
She is now bleeding from her incision. Her belly is MUCH bigger - they are doing an x-ray now & then ultrasound to see what's going on as far as the internal bleeding in her belly. They are having to suction her several times an hour now. Still a lot of fluid to get off. Woody who was here singing for us yesterday gave me a CD & here are the words to one of his songs: -When I Don't Understand- I look in her eyes, such pain, such confusion, my heart breaks, my eyes fill with tears; a heart like yours knows that pain, eyes that see like yours, O Lord. A world tries to comfort in vain, BUT I CAN GIVE HER YOU. I have learned to take Your hand, in times when I don't understand. An explanation You don't owe, for the extra mile you did go, in giving Your Son for me. Through His death I've been set free. In a fallen world that's never fair, Your peace, Your hope, Your joy is there. Jesus- the only answer that I need. O thank You, Lord ! How you've come to set me free, O thank You Lord ! You're all the answer that I need. Oh, so many times, I cried out asking."Why?" How I prayed, how I searched Your Word. Then suddenly I found it there, not what I expected to find. But there's something more that I can share, You give, to me, Your peace. When your world comes crashing down around you, and your heart is filled with despair, won't you let His love surround you, wherever you might be, the Lord is there. ....AMEN !!! PLEASE keep praying !! Thanks. kim
Monday, August 26, 2002
They tried to let her move her arms & legs & open her eyes a tiny bit (although she is so puffy her eyes are swollen shut), but when she tried to open her eyes, her heart rate & pressures went crazy, her heart is just too sick to take any work, so we are back to her being heavily sedated. So far not paralyzing her again for now. She has some internal bleeding in her belly - they've been giving her more platelets to replace them. They are also having to suction out her breathing tube every hour or so. She has been having gagging reflexes & turning blue from all the junk in her lungs. We need for this fluid to get off of her !! The docs are very concerned about all the excess fluid she has, which is worse than yesterday. The kids & I were very blessed today with guitar & singing at Emmie's bedside !! A man named Woody Wolfe whose ministry & life is touring children's hospitals. He just got back from an orphanage in the Ukraine. He started with one children's song for us & asked my Erica what kind of songs she plays on her guitar. Once she told him praise & worship, he blessed us with many !!! What an awesome ministry he has !! So, now we know that guitars & singing are ok here, so bring 'em over !! One special prayer request - please pray for Jasmine, a 16-yr-old patient here. She had a heart transplant when she was 8 and her body is now rejecting it. She spent her "Sweet 16" in here. Please pray for her mom & stepfather, too. He walks 4 miles to get the train to come to Philly every day after work. Talking to him it's obvious he loves her very much & his heart is breaking for her. She needs a miracle. And they need peace. Thanks for all the prayers going up for Emmie ! God is working !! Love, kim
Sunday, August 25, 2002
They turned off her paralytic today (the drug that paralyzes her). They still have it hooked up incase her heart rate & pressures go up too high, but for now they are not TOO high, but climbing. Docs are watching it & may have to paralyze her again. She is starting to have little twitches of her hands & feet !!! She is still on life support and has a low grade fever which is staying low grade with the tylenol around the clock. She is so puffy she looks like a sumu wrestler !! This is from all the fluids they are pumping into her. Her urine output has increased a bit from this morning, with added drugs, but now her potassium is low because of this, so they are giving her potassium. Sometimes it seems that they do more harm than good with all these drugs. The cardio says that even if she pulls through this I have to accept the fact that she has a very poor prognosis. He doesn't give me any time frame, just that her lungs are deteriorating and there will be nothing they can do. I told him that's just something to add to God's to-do list :-D If he wants her to stay here she will, and if He chooses to take her home, then she will be in no more pain & in His arms !! I found out today that Francisco, my little 4-yr old boyfriend from here last year, died. His family spoke Spanish but were learning English well. I talked with his mom a few times - such a sweet family. He had been through so much. Sometimes it gets frustrating being here. Two other kids have died in this unit that I know of since we have been here. I have talked with their parents before this and seen what they go through. Sometimes it gets very hard to remember that God is in control when you see the suffering these kids endure. But I know He is. And I know Emmie is in His hands. Tomorrow is a very critical day. We will see if she starts to wake up a little, and if she does and her numbers are ok, they may even start talking about some day trying to take her off the ventilator.(Of course her cardio won't say that - he says there is NO discussion of taking her off) And he says if & when she does come off the ventilator, she is still nowhere near being out of the woods. But what does he know - he's just the cardologist !! We are still in CICU on the 6th floor and would LOVE visitors !!! Thanks for your continued prayers !! kim
Saturday, August 24, 2002
They have tried to turn off the pacemaker .... and so far her heart is behaving !!!!!!! PRAISE THE LORD !!!!!!!! Please pray that her heart beat will be regular on its own. She is still on the ventilator, has a fever, bleeding from her nose, and in the coma, but if she does well through the night they MAY try to start slowly weaning things down to try to wake her up !!!!!! Please pray for her night that things go WELL. We have a HORRIBLE nurse tonight - I actually asked them to switch (I would never do that) and I was told NO !! She is very rough and rude & has made 4 mistakes that I have seen already !! Every time she does anything to Emmie she is so rough that all her monitors go crazy with her heart rate & blood pressure shooting up !! The charge nurse came in to get an update & she didn't know ANY of the answers about emmie !! She didn't even know how her temp has been !! And she set one of her IVs at 100 instead of 50 - thank God i caught it & questioned her & she fixed it !! One of the other moms asked how emmie was & i told her we had a nurse problem - and she guessed who !! I know she is in Gods hands but unfortunately she is in this nurse's hands a bit tonight too & Mommy is not too happy about it !! (emmie either it seems) So thanks for praying some more !! I will keep you posted as usual - what a blessing to have a laptop in the hosp right now !! Thanks to all for everything !! Love, kim
Saturday, August 24, 2002
Things are basically still the same ... Still on life support in a drug-induced coma. They tried to turn down the rate on the pacemaker during the night and her heart rate started jumping all around again, so they kept it set high. Still a very high heart rate. They are tryng to keep her temp very low (around 95 - 96 degrees) to try to keep the heart rate down. Fever spikes up if they turn off the cooling blanket and she is also getting Tylenol suppositories around the clock. Her nurse last night told me that it's extremely uncomfortable to be on this cooling blanket and she probably does feel some pain between that & everything else. Their plan is to try & keep her calm & not change things too much at all, because when they do try to get things down a little more normal, her heart goes crazy. Thanks for the continued prayers !! kim
Friday, August 23, 2002
She had another problem with bleeding but she is out of the cath lab now. I can't go see her yet, but here's the deal ... Nothing they can do ... "gentle, calm, continued care to let the right heart recover" is the immediate plan for now. There is absolutely no discussion of taking her off life support. I asked for how long on life support & I was told there is NO discussion of taking her off. She is far from even discussing it. Side effects of this are her getting weaker every day. But we all know how strong God has made her & she will bounce back !!!! They need to get the heart rhythms controlled so the heart can relax. Right now the top of the heart is too slow & the bottom is too fast. If they would beat together the heart could relax and the pressure through the lungs would be better. Basically, she is a very sick little girl. But with God all things are possible and He has her in the palm of His mighty hand. And with all these odds against her, all the glory will go to HIM when she recovers !!!! Love, kim
Friday, August 23, 2002
"Ye, though I walk through the valley of shadow of death, I will fear no evil."
The journey each of us walks is not always a meadow full of flowers. Sometimes it is a journey up a mountain, loose rocks and steep inclines.
With that in mind & on my heart ...
Emmie has been rushed to the cath lab.
All the top docs are there with her.
And Jesus too I know thank you LORD
The docs say she is not well. They don't like the way things look at all.
Her heart beat is still very irregular, bouncing all over the place.
They basically have no clue why she is doing so poorly, and they hope to find out why from this cath.
Her temp has spiked up to over 105, while at the same time her arms & legs are ice cold from her heart not circulating the blood. They get the temp down with the cooling blanket and other things, and then it shoots way back up again as soon as they try to turn off the cooling blanket. Fever is possibly due to her heart clamping down so hard its not allowing heat to escape.
They have her still in the drug induced coma on a paralytic so she can't move or react, and even though one of her 13 drugs is 100 times stronger than morphine, she does seem to feel pain it seems by watching her heart rate, and when they do painful things to her I have seen a tear roll down her face. It is absolutely heart breaking.
I will try to update when I hear something. They took her away at around 3:30 and it will probably be several hours before I know anything. (I am writing this at 5 pm)
PLEASE PRAY !!!!!!!! (I know you all are & she thanks you & so do I !!!)
Love,
kim
Thursday, August 22, 2002
This update was sent in over my cell phone, so it's short and to the point ...
The latest is that her temp is up to 105, she is in a drug-induced coma, and on life support, the external pacemaker & the ventilator. THANK YOU to ALL praying !!!!!!!!! I know God can heal her .... kim
Tuesday, August 20, 2002
Surgery is on for Thursday and cardiac cath tomorrow ... Today was very rough. First when they sedated her for the echocardiogram, her stats dropped VERY low. The nurse didn't let her out of her sight the rest of the day (stats are still very low now). Then they stuck her a bunch of times (didn't listen to MOM) to try to get an IV and FINALLY they gave in & called a cardio doc & he put it in her neck like I told them she needed from the beginning (a little frustrating to see her getting stuck over & over & nothing) After all the testing, the plan was to send her home with her IV so she wouldn't have to be stuck again tomorrow morning. Then I was told that after seeing the test results they decided she is so sick that they will admit her NOW. But thank GOD her cardio who knows her jumped in & said this baby doesn't do well in the hospital, let her be home for one more night. So he won that argument, but he lost the next one about the IV he said she is too sick to send her into the cath lab without an IV, and Mom can handle it - but they didn't feel comfortable with that since it was in her jugular, and the surgeon has authority, so they pulled it, and she will have to go through that all over again tomorrow morning!!! GRRRRRRR!! I will have her at Children's Hospital at 9:15 AM for her cath. They will look around & hopefully see something they can open up to give her more lung capacity. Then her surgery will be Thursday. I won't have a time scheduled for surgery until after her cath. (they have already rescheduled that 3 times due to other emergencies so they wait to give a real time). We will be on the 3rd floor 3NW until after cath when she will go to 6 West (6th floor) at Children's Hospital on Wednesday, and the 6th floor on Thursday in the CICU lounge - the more the merrier !! :-D To get there, park in the Wood Center (Wood Building) parking garage and take the elevator to the 2nd floor. Follow signs for bridge to main hospital. Just over the "bridge" on the left is the entrance to the 3NW / Sedation Unit. Through those doors, to the nurses station & they can tell you where to go. Love you all ... Kim & Emmie
Saturday, August 17, 2002
PLEASE PLEASE continue to pray for Emmie. She is much worse today. Her heart failure has gotten worse and also the pneumonia. The nurse was here today & said she has never seen her this sick and she also said she is "at the end" (let's wait & see what GOD has to say about it !!!!!) Emmie has been coughing a LOT all day & the nebulizer & increased heart failure meds don't seem to be helping anymore. I called her docs and I was told that she is just getting worse very quickly. Now she is going into open heart surgery weaker then she has been. PLEASE pray for her lungs to CLEAR and for her to be STRONG for this surgery. She gets admitted on Wednesday. They still plan to do the surgery, because it is most likely not an infection, but a result of her heart, lungs & lung blood vessels being in such bad shape. PLEASE pray for WISDOM and HEALING for her - that she is not laboring to breathe anymore and she is comfortable. I am also PLEADING that anyone who can make it over to Children's Hospital after Thursday (day of surgery) to visit PLEASE do !!!! It's a very hard place to be and especially after she is coming around out of the anesthesia & she is in pain the distraction of visitors would be SO good for her !!! (As long as you are healthy, of course) She would LOVE to see you !! THANK YOU ALL SO MUCH !!!! Directions to Children's Hospital of Philadelphia: 295 South - At split, stay to LEFT - Over Walt Whiman Bridge - Follow signs for 76 - Take exit 346B (Civic Ctr) - Merge toward right into traffic - Straight through the traffic light - At the next light (kind of comes to an end) bear left & get over to the RIGHT lane - At next light turn RIGHT - Follow to 1st light & turn LEFT in toward the Wood Center (the hospital parking garage is under construction & the guard at the booth will direct you where to park) EMMIE HOPES TO SEE YOU GUYS !!!!
Tuesday, August 13, 2002
Okay quick Emmie update ...
First the praise report ...
She took 28 steps !!!!! Without her walker !!!!
She would have gone further but 28 is where mommy was hehe
AND she was dancing too !!!
She lifts one leg a tiny bit very slowly & moves her arms around !!
So much for never walking (that was the prognosis several months ago - "she will probably never walk")
I had her at the doc today for her weekly weight check - she has LOST weight again ... almost a whole pound ... and she has pneumonia again and is in extreme congestive heart failure again !! NOT good at all, especially a week before open heart surgery!!!
On one hand she's not as strong as she should be to go into surgery, and on the other hand, this shows that she NEEDS the surgery soon !!
Please pray for her lungs to clear up and for her to gain weight & just be ready for surgery if this is God's timing for it.
God's will !!!!! That's all I can pray anymore - and all she needs - God's will for her !!
She still needs blood - at least five people needed to donate & we have one - she needs type B Positive ... if anyone has it & would be willing to donate for her, PLEASE PLEASE call me : 856-985-8817 or my cell 609-980-2240. (There are specifics to follow & certain paperwork you need from me to donate for her.)
THANK YOU !!!!!
kim
Wednesday, July 24, 2002
Hello,
Just another little Emmie update ...
The surgeon's scheduler called me again today & said that the cardiologist added a few more tests to the Aug. 20th schedule. Besides for the echocardiogram, she will also have a chest x-ray, EKG, and lung perfusion scan. This scan is where they put in an IV (major thing for her now, as they usually have to stick her anywhere from 5 to 20 times to get in) and then they inject die through the vessels to her lungs and see it on a picture as they do it. Please pray about this scan. The last time they tried to do this it wasn't going in right, and she was in a LOT of pain !! And I was told that they will NOT keep this IV in for her cath or surgery - she will have to be stuck again.
Please also pray for understanding & cooperation from the docs in Korea. The cardiovascular surgeon here is trying to contact them in Korea to get detailed reports from the surgery they did. This information is extremely important before they go in, and they are having a hard time with the Korean docs. Apparently there is a cultural barrier and the docs in Korea take insult when asked for any more info than they have already given. And when they become insulted this way they refuse to help at all or give any info. They don't seem to understand that the surgeon simply wants the report to know her anatomy better & help with the upcoming surgery.
But I do have a praise report ... yesterday we went to the mall with Bonnie Capewell (needed to get away from the repairs & cleaning for a bit!) While I was on line at Chick-Fil-A, a woman working there sweeping began talking to me about Emmie - she said she was so beautiful and she reminded her of her own daughter who had been very sick. She told me how she had donated a kidney to her daughter & how she found out she was a match, with type B POSITIVE blood !!!! So after talking a bit, I mentioned Emmie is B Positive and needs blood for her upcoming surgery, and she gave me her name & phone # so she could donate !!!!! Then she went in the back & brought out her manager who walked us all back to the food court & sat & prayed with us !!!! GOD IS SO GOOD !!! How else would we ever have known that this woman had the same blood type as Emmie - just that it came up in conversation is a miracle !!
He is SO good !!! And now even more people praying for her !!
Just had to share that !! He reminds me every day that HE is in control. He is the Great Physician and I am trusting in His perfect plan for Emily.
Love in Jesus,
kim
Monday, July 22, 2002
Thank you for your prayers ... I talked with the surgeon's office today. They have scheduled the SURGERY for THURSDAY, AUGUST 22nd. I will take her in for pre-admit testing & an echocardiogram on Tuesday, Aug 20th, then she will be ADMITTED on Wednesday, August 21st and she will have a cardiac catheterization. Then the morning of the 22nd will be the surgery. I won't have any exact times until the day of pre-admit (Tues the 20th)
I was told SHE NEEDS BLOOD !!!! When they have her on the heart lung machine, she needs blood from at least THREE donors to be put directly into her system through the heart lung machine during surgery. Then for transfusions after (which she had MANY of last time) she needs at least 2 more people to donate.
To donate for the day of surgery, they need fresh whole blood, from 3 people, which needs to be donated only on August 20th. It has to be exactly 48 hours before surgery, so this is the only day to donate for that.
To donate for transfusions, it can be any day from the day before surgery (Wed the 21st) until 6 days after (which would be Wed the 28th).
The place to donate is at the Red Cross at 7th & Spring Garden in Philadelphia. They are sending me directions & tags needed for donating.
If anyone with type B positive blood is willing to donate for her, our phone # is 856-985-8817, and my cell phone # is 609-980-2240. I can get you all the info, paperwork, and directions you will need for directed donations.
Thank you all so much for your love & prayers for our sweetie !!!! God bless !!!
kim
Friday, July 19, 2002
Okay, here is the latest on our little sweetie ...
I met with the surgeon today. He was able to shed light on why Emmie has been in extreme failure & steadily getting weaker. The other doctors didn't tell me this, and he assumed they had, BUT ... the conduit they had put in last August (that big surgery with the several week hospital stay) ... Well, that conduit is completely ecluded. This means that it has absolutely NO blood flow - it's completely worthless. All she went through in that surgery & all the complications - it's gone. Before that surgery there was no direct connection to the lower lobe from the heart, and now again there is no flow to that left lower lobe.
The surgeon said that he now knows for sure that "the problems she has will never be resolved - not ever". They will never be able to repair her. She has a very short life expectancy. Apparently he can see all of this from the cath pictures and the way the vessels are. They had told me when she first arrived from Korea 17 months ago that within a year and a half or so they should have a pretty good idea of whether or not she will survive by whether or not the vessels develop the way they were hoping. He believes he has that answer now. The vessels not only are not developing properly, but they are deteriorating. There is a lot of obstruction and they are all irregular.
The other vessel he was thinking of going back in to try & tie in (the other one he wanted to get last year but couldn't get to) he now says he is not even going to attempt. After seeing that the vessels are not developing properly, and also that one has a major narrowing in the middle, he will not try it. He wants to try to improve the vessels that are already going to the heart. He will look at the pulmonary arteries (she has many weak ones instead of the strong one she should have) and he will see if there is anything else he can enlarge to improve blood flow.
The right pulmonary artery stent that was just put in at Deborah has helped her some, and this will also be replaced during surgery with tissue to patch & widen the arteries.
He said he now knows that he will NEVER be able to close the hole in her heart. He will look and see if he could partially close the hole with a patch of some sort so that the blood is more controlled. This would hopefully improve blood flow to the lungs.
He is planning to do the surgery in late August. He is very concerned about the risks, especially with her being on a heart /lung machine for the THIRD time. There is "significant risk" of brain injury with being on it again, and also higher risk of her not surviving the surgery. The neurologist had told me that she WILL HAVE some degree of brain injury from it no matter what. The question is to what degree and we may know soon after surgery, or maybe not for quite a while what the effects will be.
The surgeon says that gradually her lungs will become so diseased that there will be nothing they can do, and we will have to discuss then to what extent we want to intervene with life support, etc. The goal of the docs now is for good quality of life. She is so happy and the main concern of all of us is to keep her that way & not even let her know she is sick.
With all that being said, I am still trusting in God. Maybe His plan is for her to have a short but very happy life, or maybe He will perform a miracle. Either way, it is His perfect plan for her and I do trust in Him. The advancements in medicine are incredible, and even some of her doctors are hoping for her to be well. And she is a "mini-witness" everywhere she goes. All of her doctors and nurses are touched by her - I am always hearing that she has "something special about her" and I always respond that she has the JOY OF THE LORD. Some of them look at me a little funny, but I know it makes them think everytime. And I believe that is her purpose here. Maybe more, but I know that God is touching people through her.
Surgery will be either August 22, 23, 29, or 30th. We already know she will need blood. Anyone with B positive that is interested in directed donation, please let me know. I only wish I could donate. That was one thing that really broke my heart to know I couldn't help in that way. I am type O. The hospital gives me all the information on directed donations, and they encourage it. I will have all the info on how to do it.
Thank you for keeping her in your prayers.
Love in Jesus.
kim
Thursday, June 27, 2002
Okay, I hope I am not being annoying with the updates, but Emily just has so much going on !!
I finally reached the Nephrologist (kidney doc) at Children's Hospital today & actually got an appointment for next week !! The cardiologist insisted that she be seen ASAP about the suspected kidney disease, "Renal Tubular Acidosis". Hopefully now we will have an answer about all of that kidney stuff.
I heard back from the cardiologist today and he filled me in on the latest Emmie meeting. He speaks very slowly and it gives me a chance to write everything he says word for word & look over it later so it sinks in.
He said her survival depends on the ability of her lung blood vessels to take what we are pushing at them. They see very clearly the one vessel they would like to tie in (the one that they couldn't get last surgery because of all the complications she developed during surgery).
Thinking of all the options, they all feel that it makes no sense to go in & do something little. They want to do as much as possible if they go in. This would consist of tying in that vessel, putting in another conduit, partially closing the hole in her heart, and a few more things to allow more circulation.
The problem now is that the surgeon fears it may be too much of a risk for her. Yet they say she won't survive without the surgery. One minute she won't survive without it, and the next minute she may not survive the surgery. ARGH !!!
Right now we are waiting for the surgeon to sort out in his mind what the risks are. They have told me to hold off any other surgeries, including the stomach G-tube. If they decide to do the surgery, it could be very soon, and they don't want any other risks of infection or complications to interfere. (and they absolutely would NOT consider doing both surgeries together, which is understandable).
I guess we all know what to pray for ... WISDOM !!!! This surgeon is supposed to be the best of the best, but we know The Great Physician and that's who I am trusting in 100%.
Please keep Emily in your prayers. She really needs them. Thank you & God bless !!
kim
Wednesday, June 26, 2002
Hello again,
Just a quick update on our hearing test today ... they didn't have to sedate her Praise the Lord !!! They just gave her a regular infant hearing test. And ... she passed ... NORMAL hearing !!! Praise God one problem she doesn't have to worry about !! The audiologist was so nice and even squeezed us in to see the ENT doc from the Cleft Palate team that we have been waiting to get in to see !! He checked her out briefly and is not concerned too much about her palate problems. He does think it could be part of the cause of her speech delay, and not sure if it will ever improve, so she may always have speech problems, but he said the palate problems are "academic" - nothing to do surgically (thank the Lord - we don't want anything else operated on more than what we know so far !!!)
While I was at the hospital I went to a few of the departments to try & schedule appts with the specialists she needs (Genetics was supposed to be doing this for me and nothing yet). She will see Opthalmology on July 10th and Psychology on July 29th, as long as she is not having her heart surgery. One of the other specialists had nothing until NOVEMBER 15th so I said I will wait & see if Genetics will get her in sooner.
I guess our next step is to find out when they plan to do the heart surgery. The surgeon is very difficult to schedule and work with, but apparently he is the best to do what Emily needs done.
I know ... "Be Still ..."
:-D
Love in Jesus,
Kim
Tuesday, June 25, 2002
Hey everyone,
Well I heard from the GI doc today and Emmie's Upper GI that she had last Monday is normal anatomy wise, which means she can have the permanent feeding tube put in directly to her stomach. They are now deciding whether or not it will be done as an open procedure, where they cut her open and insert the G tube into her stomach, or if they will do a peg, where they put it down her throat and puncture through to the outside at her stomach. (Both sound so pleasant, don't they!!)
Apparently for Emmie the open surgery one is safer, because they can watch for any bleeding and other complications with it open, instead of doing it all through ultrasound. Of course the recovery of this one is longer, though.
So the question now is whether or not the cardiologists will allow them to do this surgery while she is having her open heart surgery (I will be surprised if they do, because last year they wouldn't even take blood for another doc when she was in the O.R.) The concern of the GI doc is that she will have yet another sedation if they don't do them together. They mentioned something to me last year about her having oxygen deprivation to the brain with each sedation, and especially being on the heart/lung machine with her heart surgeries.
And on top of that, I am bringing her for a "Brain Stem Auditory Evoked Potentials" test with sedation tomorrow also at Children's Hosp. This test is for her hearing. Since she is so developmentally delayed, they need to sedate her & do the test this way. This will finally give us a good idea of whether or not she has a hearing impairment, and if so to what extent, or if it is just speech.
The pediatrician and I have thought about this long & hard and decided she needs this test. There may be a chance that we can help her with hearing aids if she has a hearing impairment, and she would be able to communicate better. It's especially important that she be able to communicate with her doctors and nurses so she can get her needs met while in the hospital. She gets very upset when they don't understand sign language and she needs something. It must be so scary for her.
Her sign language teacher is working on ways for her to communicate after surgery when she is on the ventilator & can't speak or use her hands. These teachers & therapists she has are SUPER - please keep them in your prayers, too !! They are such a blessing to Emmie AND to me !!
Her Physical Therapist is working on getting her a special needs bicycle to help strengthen her legs. Her walker will do this but it works her heart so much, and she gets really wiped out. The bike will be much easier on her heart. The problem is that insurance will not cover this, as they consider it "recreational" and the price is about $2,000 !! So, the therapist and I are working on finding an organization that may consider helping with the purchase of the bike. We are looking into Variety Club (which Emmie is already a part of) ... if anyone knows of any other organizations who may help with this type of thing, please let me know !
So, we will be at Children's Hospital most of the day again tomorrow , and I will update you when I hear anything more. Thanks for all of your concern and especially those prayers !! Please keep them coming !!
Love in Jesus,
kim & emmie
:-D
Friday, June 14, 2002
Hi everyone,
Sorry I haven't sent an update in a bit, but Emmie has had a few rough days. But I just had to send this ...
I am so happy to share with you that today in the Burlington County Courthouse in Mt Holly, N.J., "AHN, JIN YUNG" legally became "EMILY GRACE MANGIONE" and a legal United States citizen !! It took a long time and a LOT of paperwork & legwork to get to this point, but the adoption is finalized and our sweet little Emmie is now OFFICIALLY our sweet little "Emmie" !!
Thank you all for the prayers while we waited for her arrival from Korea 16 months ago, and thank you for your continued prayers for her health. I am the most blessed mother in the world to have the honor of hearing her call me "Mommy".
Love in Jesus,
kim
Sunday, June 09, 2002
Okay, here we go again ...
She looked good at church tonight, and I am glad she had a chance to enjoy herself a little tonight at least. But she has had no appetite for about a week, and as soon as I got her home tonight she started vomiting like crazy again. Her heart rate is 162, she's having chest retractions, and she is blue & her lips are very pale - white !
Her regular pediatrician wasn't on call & this one doesn't know her well at all, so I am just kinda doing what they told me last time with the pedialyte in the feeding tube & if she doesn't keep it down we will be heading to Children's Hospital tonight.
She is sleeping right now - her eyes rolled back in her head & she is out, but her respiratory rate is not too bad. I am more concerned with her chest retractions - I haven't seen them this bad, and also her pulse ox. Since I don't have a pulse ox machine here I can't check that, and it was low when they discharged her from Deborah Hosp Friday. I pray that we won't need to go to the hospital tonight. She has had enough for a while. She just feels so lousy, it breaks my heart.
Thank you all for your prayers !!!!!! Of course I will keep you posted.
kim
Friday, June 07, 2002
Well, we are home now ... Praise God !!
The cath went well and while in there the docs did 2 balloons or "angioplasties" to open up the narrowings they found. Apparently this is what has been causing some of her trouble lately. I thank God for giving the doctors this wisdom to repair what they could for now. Her pulse ox, however, is lower than it has been since she arrived from Korea, and the conduit that was placed in Korea & has already been replaced once also has narrowing & will need to be replaced again. The docs from Deborah Heart & Lung Ctr will be meeting with the surgeon at Children's Hospital to see what he wants to do next & when. The next step will be the BIG surgery at Children's Hosp.
Thanks for your prayers. Although I sat there all alone, God sent a sweet Christian woman to sit with me & we prayed together & shared & supported each other. Her husband had laser surgery on Wednesday and seems to be recovering well - Praise God for that & for sending us to each other !! Every time I have been at either hospital, God has given me a chance to witness to at least one person, and yesterday I got some back myself as well. He is so good !!
I will keep you posted.
kim
Wednesday, June 05, 2002
Hello,
Well I just brought her back to the doctor ... she is very lethargic and blue, and hasn't been eating well for over a day. The doctor checked her & her liver is enlarged and her murmur is worse and her heart rate is over 150. She is in EXTREME congestive heart failure.
The pediatrician called the cardiologist from the exam room and the cardiologist said she now really needs this cath that is scheduled tomorrow. And from what we learn from the cath he expects to have to have the surgery at Children's Hospital scheduled sooner than we planned.
Please continue to pray for our precious baby - she looks awful right now - it's scary. I can't wake her up.
I need to have her at the hospital at 6am tomorrow for the cath.
Anyone who has nothing better to do, I would so GREATLY APPRECIATE someone to sit with me - I will be all alone on the 3rd floor - the waiting area straight ahead when you get off the elevators. Kira will be home babysitting the other kids, as Mark will be at work, so I won't even have my other kiddies there to distract me. Even a cath procedure is very risky for Emmie, and now she is in extreme failure, so, I am sorry, but I am human, and I do worry ... doesn't mean I am not trusting in God. I know He has it all planned out for her good. I do appreciate all of your prayers and love.
I will let you know what we learn from the cath as soon as I can.
God bless all ...
Love in Jesus,
kim
Thursday, May 30, 2002
Well the nurse came last night & put in another NG tube (this is one thing I refuse to do - I'm the "good guy!") - Emmie didn't even wake up for this - usually kicks & screams & we have to hold her down - Dr called last night around midnight & he had me run the NG tube through the night at a low dose with Pedialyte in it to try & replenish the fluids she has lost - and PRAISE GOD during the night she stopped vomiting and started wetting diapers again - (there is a big concern with dehydration with her). Her regular doctor was not around last night, and the one on call gave me his home phone # incase she got any worse & he also called early this morning to check on her again. She is still not eating and only taking sips of pedialyte, but she is keeping down the pedialyte I am putting through the tube. It seems to be some kind of viral thing, and the doc says as soon as she gets over this she will have more weight loss to worry about.
I thank the Lord for healing her tiny body & for keeping us at home last night and not at CHOP and for our praying friends !! I do trust in Him & put her in His hands - the best place for anyone to be.
Thanks again for love & prayers !
kim
Wednesday, May 29, 2002
Well, she started refusing to eat or drink last night and still today (even her favorite waffles), so we increased the tube feeds, which is increasing her congestive heart failure symptoms. She is now vomiting violently - falls asleep only to wake up minutes later vomiting again. The feeding tube came out, so another has to be put back in, as this is her only way of getting fluids now. The nurse said if she continues vomiting like this much longer tonight, I will have to take her to the hospital. I only pass this on because I know you guys love her & are praying for her - THANK YOU !!!
kim
Tuesday, May 28, 2002
Okay I will try not to be discouraged ... although I did cry in the doctor's office today ... Emmie has once again LOST WEIGHT. Over the past week or two we have increased her tube feeds all the way back up to what made her heart really go into failure and she is showing signs of it now again and yet she has LOST weight !! I put scoops of duocal into all of her food and drinks, and buy the highest calorie everything in the stores. She is on a very high calorie diet and is constantly eating. Even her pediatrician doesn't know what to do now.
I take her to see the G.I. again next week & will see what she thinks. The plan was to put her into surgery for the permanent G-tube directly into her belly so we don't have to keep changing it in & out of her nose & it won't be down her throat anymore. I pray that the GI has some more ideas, although she was kinda tapped out of ideas 2 months ago.
She is not in the health & weight they had hoped for for this next surgery. They wanted her to have doubled her weight before another big surgery, but she has only gained about 3 pounds since then ! I know God has a plan ... and He sees the whole grand picture for her, but it does get a bit frustrating. She is weak & all I can do is not helping. Kinda feels like I am failing as her mother sometimes. The doctors are wonderful & try to encourage me, but it is still upsetting.
Thank you for your continued prayers. I truly mean that !! THANK YOU !! And thank you all for always asking & caring about her. She is loved.
kim
