- The intestines can adapt and your child can gradually start tolerating food just like a normal kid. They can eat as much of whatever they want whenever they want.
- Your child can get an intestine or multi organ transplant. There are many issues that come with transplants but in the end your child is no longer "short gut."
- You can continue to live your life the way you want and not let a little thing like missing organs get in your way and teach your child to do the same. Still try and work everyday at making the intestines that are there do their job better, but do it while living as normally as you can. Hopefully this will lead to the same result as #1.
Max has extreme long-segment Hirschsprung's which has left him with only 25cm of small bowel. Unless he gets a bowel transplant TPN or some version of fluids will always be a part of his life.
Now some of you out there may think that taking a child with a central line, G-tube, ostomy, and all the medical equipment all the way to Paris is insane and would be hard enough to do with normal a kid. But TPN and all that comes with it is "normal" for short gut parents and kids. So they should be able to live their lives just like all other "normal" people. It is just a different version of "normal". So bring on Paris!
I am so proud of Max's parents and so excited for them. I hope all goes well on their trip and that they come back ready to travel more. With a nice break and much sleep of course.
On the Omegaven news front, there are now 24 Hospitals in the US that are administering Omegaven. There are now 60 patients that are on Omegaven, Ellie was number 23. We also just added a link to the side bar of this blog for the "FDA IND form" that is needed to get your child or yourself approved to use Omegaven.
Gus is doing well. He is came home today with a shaved head and a draining incision on his head. He is doing well, loving the strong antibiotics and riding the pain killer wave. It is nice to have our dog back.