As some of you may remember a while back we wrote about a little boy that we met at Children's receiving a Liver, small bowel and partial pancreas transplant. Many of you have been asking how he is doing so here is an update.
He is doing very well. He is out of the ICU and has settled into to spend a while learning how to use a full set of intestines and healthy liver. Amazingly enough he was able to keep the 18 cm of small bowel that he had so now he has more intestine than most people. He is having normal baby poop and his parents are looking forward to being able to feed him anything he wants, even junk food.
His new liver is doing well. There were some signs of partial rejection early on, but everything seems to be getting better. His blood numbers that indicate liver health look better than they have looked in a long time.
He still has a long way to go but is definitely on the up swing from where he was, and that is great news. Life post transplant can be hard but, it is what this little boy needed. At this point his has almost fully recovered from the surgery and now his body is just struggling to learn how to use its new parts.
His parents were able to meet with the pathologist and get a look at Christian's old liver. Now this may be a bit gross for some of you out there but below is a link to a video of the liver and what the pathologist said. I find it fascinating and one of the best visual aids as to what doctors mean when they say "liver damage."
This is your liver:
This is your liver on TPN:
http://video.google.com/videoplay?docid=-2822532247311576098&pr=goog-sl
I thank Christians parents for posting the video so that we could put it on this blog. I hope that other short gut parents are able to see this video and get a better understanding of what TPN does. Christian is a very strong little boy, once again he is my proof that these kids make us adults look like wimps.
We hope and pray that by using Omegaven and not intralipid Ellie's liver will not end up looking like this. She has had two liver biopsies in the time that she was in the hospital and both times they said there was mild scarring but no inflammation. Their theory is that the scarring, since it is not getting worse, could have happened in the beginning when she wasn't on Omegaven. They also said that its appearance was normal and not green.
We also realize that Ellie was only the 23rd infant to go on Omegaven and that there has been no true testing done, so we realize that she will not be out of the woods until she is off of TPN.
3 comments:
Amazing! Our little guy was only on TPN for 2 months and he was already turning yellow and has to be on two additional months of liver meds. I am so thankful for Omegaven and the hope it offers for so many kids. You guys are helping so many by telling your story. This week in People magazine they had a story that talked a little about "short-gut".
You sure don't see that too often.
Love your blog!
I can be a little squamish about some of this stuff - it's easier when it relates to someone you care about, though. But I am really happy that you put the liver link up - if that doesn't convince anyone of the value of fish oil, I'm not sure what would. Thanks to Christian and his family for the video link and to Gib and Abby for this blog. It is such an amazing education - not to mention, source of laughter (well, ok, and some tears).
Love,
Barbara
MY SON ANTHONY WAS BORN WITH AN OBSTRUCTION IN HIS GUT . WELL AFTER HE WAS BORN WE FOUND OUT HIS INTESTINE TWISTED .HE HAD ALL BUT 30 CENTIMETERS OF HIS SMALL BOWELL REMOVED. BECOUSE OF HIS INABILITY TO DIGEST HE WAS PLACED ON TPN AND LIPIDS. HIS SKIN HIS EYES AND EVEN HIS SWEAT WAS YELLOW. WHILE THE TPN KEPT HIM NURISHED IT ALSO WAS KILLING HIS LIVER. WHEN HE WAS 10 MONTHS OLD HE RECIEVED A LIVER AND SMALL BOWEL TRANSPLANT.ANTHONY IS TURNING 3 IN JULY. YES WE ARE STILL IN AND OUT OF THE HOSPITAL BUT , AND ON MANY MEDS WE ARE JUST HAPPY TO STIL;L HAVE HIM HERE..
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