Saturday, September 15, 2007

Overcoming Short Bowel

In my mind there are many ways to overcome all that comes with being short gut and being the parent of a short gut child. Here are some examples.
  1. 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.
  2. 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."
  3. 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 Munakata in PARIS!!!!!!
This is Max, he was on our blog last February looking very yellow and not to healthy. Thanks to some amazing parents and Omegaven he is now on VACATION in Paris. Yes, I said vacation. Okay, so his parents are there for work, but how normal to be able to bring their child with them.

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.


Anonymous said...

Thank you so much for this posting. Such encouraging words. Glad Gus is better and back home, and that Yuko, Randy and Max made it to Paris. Amazing!
brenda p. (Nora's great-aunt)

Unknown said...

We have been terrified of going anywhere with our son who is also short gut and on TPN. He stopped the Omegaven in May 2016 which the were not very happy about but the Doctor said he didn't need it anymore. He is almost 16 months now. How did you manage with taking the supplies overseas?!?!?! This would help us so much if we only knew how to take the TPN with us while keeping it cold and getting through security without any issues! Thank you!