Cross posted, as suggested, from Crohn's forum.
I have a son, 5 months old now, with HD. He was diagnosed at just one day old. Hd was suspected because he didn't pass the meconium stool like he should've. He wasn't interested in eating and was very lethargic. He was transfered to a NICU level 3 hospital capable of treating him when he was just over 24 hrs. old.
It was discovered that he for sure had HD when a suction biopsy was done at the NICU hospital. Through the biopsys we learned that 4 inches of his colon was affected which was great news since sometimes the entire colon is affected. His surgery, for an ostomy, was then scheduled for the following day...he was just two days old :(.
The surgery went well. His stoma care was easier that I had anticipated and as soon as I got the hang of caring for it the second surgery was scheduled....for the reversal!! We were once again thanful for the capablities of his surgeon. What a really great person she is! The reversal went well. However just two weeks after the surgery he was back in the hospital. He wasn't passing stool and was very distended. Our hearts broke again. He was given Botox injections in the spincter muscle to help it relax enough to pass stool and gas. Apparently this isn't uncommon. However he still has gas :(, not as bad as before since he is able to pass gas some.
His surgeon gave me a Foley (sp?) to use to hep relieve his distention and it does help. In the beginning I used it twice a day, then once, now we are back to twice a day:(. His surgeon thinks that a larger dose of Botox may be needed....I just hate having to put him through all that again:(. It would just be a inpatient surgery but still....I can't bare the thought or sight of the IV being stuck in him again. He has been through so much and I don't know that I can put him through anymore needles and pricks and pokes. I feel horrible for him...I feel responsible. I just want my baby to be a baby and enjoy all the great things that go with it,I feel as if that has been taken away from him. I'm worried. Does anyone know of any alternatives? Has anyone here had a reversal done and experienced distention, tight spincter muscle, etc.? I don't know what is common experience or unusual....I feel so lost.
Post Edited (triomama) : 6/9/2006 11:23:08 AM (GMT-6)