Tuesday, May 13, 2008

TUESDAY, MAY 13, 2008 08:26 PM, CDT

We have put off this update for long enough today, so here it goes. We finally have a positive diagnosis.

Today Sam was diagnosed with Microvillus Inclusion Disease (or Congenital Microvillus Atrophy).

I have added two links to the "links" section of the website which give more information on this disease. Basically Sam's intestines do not work and, unfortunately, they will not ever work. There is not currently a treatment or medication that they can use to make Sam better. Sam's complete nutrition and fluid intake will need to come from an intravenous line for the rest of his life. Our only other alternative is to consider a intestinal transplant. While we will be making arrangements to visit one or two transplant centers in the next few months, an intestinal transplant will most likely not be a good option for Sam for the time being. Being sustained by his TPN (This is the fluid he receives in his IV) he will be able to live a mostly normal life. He will be able to play outside, play, and do most things that any other kid can do. Intestinal transplants are relatively new and very risky. The chances of Sam surviving the transplant with out any severe complications are very low. TPN poses its own risks, the TPN may eventually damage Sam's liver. Hopefully his body will tolerate being supplied all of his nutrition through the TPN long enough for their to be breakthroughs in the transplant field.

Sam will be in the hospital in Milwaukee for at least a few more weeks while they get a feel for exactly what needs to be supplied to him daily through his IV. After that we will most likely be headed back to Neenah for a few more weeks in the hospital there. We have requested to move him back so that we can be closer to home and are hoping that all goes well enough that this can be sooner rather than later.

Once Sam's input and output are under better control and we learn how to manage his care, we will be taking Sam home.

Tonight I don't think we have much else to say. We are still trying to absorb everything and it probably really hasn't hit us yet. We will continue to post updates to Sam's site every few days for now, and will probably keep this site up with weekly update once we head home.

Thank you again to everyone who has been so supportive so far, it means the world to us to see people visiting the site and keeping up on Sam's progress.

No comments:

Post a Comment