Monday, September 14, 2015

What to do, for now

Brayden was discharged from the hospital (and hopefully no need to go back any time soon).
He completed the necessary GI motility testing (Barium Enema, Sitz-Marker Transit Study, Colonic Manometry, Anorectal Manometry).  All of this information should provide the doctors with more than enough data to decide the best long term plan for Brayden.

Brayden's motility is not so good, his final abdominal x-ray still showed those little sitz-marker rings still in his system (many days after they were placed).

We were sent home with prescription for potassium.  The hope is that giving him a daily dose of potassium will prevent him from having any significant troubles...after all we still need to get the poop out.  Brayden will continue to get Miralax daily and giving him the potassium should allow us do an enema a couple of times a week without putting him in danger (messing up his electrolytes too much).  And Brayden will have blood work done just to check everything.

We talked with the GI team on the floor, who was in communication with the GI motility doctor, as part of the discharge.  We know Brayden is in a holding pattern (literally holding his poop) till the best long term plan is decided.  So we posed the question to the doctors, "What would be the long term plan for Brayden?"

Then they said it.  I knew it was coming, it has been mentioned and we have danced around the subject for several months.

Brayden will need some sort of ostomy surgery.  There are three options:  Ileostomy or a Colostomy or Cecostomy (which doesn't really look like an option because his colon is not working much anyway).  After reviewing all of the tests, they will be able to assess which is best.

We will meet with the motility team in the coming weeks find out/decide which would fit Brayden's needs.  Then schedule whatever the procedure may be.

Again, I say, poop is important.  It has to come out one way or another.  But wow, I really do not want him to have any sort of ostomy.  I cannot let myself go in to the emotions of what this means for his life, but for now I can just say, it makes me sad.
On a lighter note, we learned that Brayden enjoys the movie Aladdin and Lion King at the hospital, perhaps from all of the music.  At least a little something he can enjoy for a bit and we may need to add those to his collection at home.

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