| Author |
Message |
NavyDad
Member
Username: Gunsmyth
Post Number: 1
Registered: 01-2012
| | Posted on Saturday, January 07, 2012 - 01:33 pm: | 
|
Just a background story:
On Oct 25 my wife gave birth to our first child. A 5lb 15oz baby boy we named Kai. after the usual 2 day stint we took him home for the first time. On the second day back he was extremely lethargic (we later found out he was in a coma). We rush him to the ER where, 10 minutes later, he stopped breathing. The staff saved him and they transported him to Bronson hospital in Kalamazoo. There they ran some test, spinal tap, and the doctor had a sudden urge to check his ammonia levels. Normal is in the range of 30-60. They found that his levels were at 1100. they then airlifted him to the University of Michigan Childrens hospital to the PICU. There, he was diagnosed with Citrillanemia, a genetic liver disorder in which his liver cannot break down protein and process the ammonia created from it. They said he would be on an extremely restricted diet or he could get a liver transplant. After about 2 1/2 weeks they discharged him. about 2 weeks later he was readmitted to the hospital for surgery on his stomach. i found this site and figured it would be good to talk to others going through the same thing or similar.
-Brian |
crazydave
Member
Username: Crazydave0866
Post Number: 9
Registered: 12-2011
| | Posted on Saturday, January 07, 2012 - 04:02 pm: |
|
If needed I would be willing to be tested for compatibility for a living donor.
David |
Holly
Member
Username: Holly
Post Number: 530
Registered: 09-2007
| | Posted on Tuesday, January 10, 2012 - 07:30 pm: |
|
I hope this post finds Kai doing better. I will keep him in my prayers and hope that a suitable donor is found for him.
God Bless
Holly Mulkerin
Medina Ohio
Heart transplant 1/28/09 I have a Happy Heart
Be kind. Remember that everyone you meet is fighting a hard battle. Harry Thompson
|
|
papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 2133
Registered: 10-2007
| | Posted on Friday, January 13, 2012 - 09:43 am: |
|
I too hope that Kai has seen some improvement. May he be able to obtain the donor liver that is suitable for him very soon. I will keep you and Kai in my thoughts and prayers. Many hugs to all.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
|
|
Ari
Member
Username: Aricab
Post Number: 1
Registered: 01-2012
| | Posted on Tuesday, January 24, 2012 - 10:10 pm: |
|
Brian,
My son has a urea cycle disorder as well. OTC. Same dietary restrictions, amonias, etc...He was transplanted. Would love to chat. |
