usvi-on-line
Prayers needed for my grandson Luke <3
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GraysonDave
- Posts: 479
- Joined: Thu Feb 11, 2010 7:41 am
- Location: Georgia
We are one month post transplant and Luke had his bili drain removed yesterday! No more drains!! Yippee! His doctor's say he is not doing Good, not doing Great, He is doing AMAZING!
All of his blood levels which were in the 800's are now around 22! He has learned three more words, climbed a flight of stairs, pretty much eaten every morsel of food in my house and is actually sleeping more at night....It has been a total transformation, he is like a new child, so mischievous and strong that he likes to tip over things!
Thank you all so much for all your prayers and good vibes.. I truly feel that Luke had people raising him up from all over the world and it worked! We could not be more happy:) My daughter is having professional photographs taken in the morning in Chatham and I will post the pics.. He looks so GREAT! Thank you all so much!
All of his blood levels which were in the 800's are now around 22! He has learned three more words, climbed a flight of stairs, pretty much eaten every morsel of food in my house and is actually sleeping more at night....It has been a total transformation, he is like a new child, so mischievous and strong that he likes to tip over things!
Thank you all so much for all your prayers and good vibes.. I truly feel that Luke had people raising him up from all over the world and it worked! We could not be more happy:) My daughter is having professional photographs taken in the morning in Chatham and I will post the pics.. He looks so GREAT! Thank you all so much!
Julie
Live from St.John
Facebook Group
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California Girl
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mindehankins
- Posts: 3014
- Joined: Fri Mar 06, 2009 8:21 am
- Location: Western NY State
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Berlingirl
- Posts: 499
- Joined: Mon Aug 07, 2006 6:09 pm
- Location: New England
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California Girl
Hi Forum!
I wanted to update you on Luke. I have gotten a few pm's asking how is doing so I thought I should let you all know! He has been doing really awesome. Liver wise his numbers are perfect. They left Boston about six weeks ago to go to Atlanta and he gets his labs drawn weekly in Atlanta and results go right to Boston. He is coming home this week
for about a week. He tested positive for EBV Epstein Barr Virus which is the same virus that causes Mono just prior to them leaving six weeks ago. His EBV Levels have been really high so they have to keep a close eye on that because it can cause something called PTLD Post Transplant Lymphotic Disorder which is a cancer of the lymphnodes. They could lower his antirejection meds so he would fight this on his own but then they risk him having rejection. There is a fine line to be balanced with this.
He also had an angioplasty of his portal vein prior to leaving for Atlanta if you remember he had a large clot in his portal vein so when they harvested his donor's liver they had to also harvested a new portal vein. So where the two veins were connected there was some narrowing which they inserted a balloon and fixed that problem but it can happen again so that is what they will be checking on this week. My daughter discovered he has milk allergies so he is on Almond Milk and seems to love it! She also got him into Early Intervention because he is a little behind with his speaking and motor skills but that is to be expected. He is finally sleeping through the night!
The BEST news is he is going to be on STJ with us in January!! I will definitely be posting pics of that!!
Here is a pic of Luke taken yesterday!
I wanted to update you on Luke. I have gotten a few pm's asking how is doing so I thought I should let you all know! He has been doing really awesome. Liver wise his numbers are perfect. They left Boston about six weeks ago to go to Atlanta and he gets his labs drawn weekly in Atlanta and results go right to Boston. He is coming home this week
for about a week. He tested positive for EBV Epstein Barr Virus which is the same virus that causes Mono just prior to them leaving six weeks ago. His EBV Levels have been really high so they have to keep a close eye on that because it can cause something called PTLD Post Transplant Lymphotic Disorder which is a cancer of the lymphnodes. They could lower his antirejection meds so he would fight this on his own but then they risk him having rejection. There is a fine line to be balanced with this.He also had an angioplasty of his portal vein prior to leaving for Atlanta if you remember he had a large clot in his portal vein so when they harvested his donor's liver they had to also harvested a new portal vein. So where the two veins were connected there was some narrowing which they inserted a balloon and fixed that problem but it can happen again so that is what they will be checking on this week. My daughter discovered he has milk allergies so he is on Almond Milk and seems to love it! She also got him into Early Intervention because he is a little behind with his speaking and motor skills but that is to be expected. He is finally sleeping through the night!
The BEST news is he is going to be on STJ with us in January!! I will definitely be posting pics of that!!
Here is a pic of Luke taken yesterday!
Julie
Live from St.John
Facebook Group