John and Naomi left Children's Hospital at 1pm Saturday to head back to Huntsville for the night. They got back to the hospital yesterday morning about 11... the ward desk said they had very good news.....
Alex had 3 bowel movements over night Saturday and Sunday morning.......nurse said he was peeing- not leaking, but steady. He had two more BMs Sunday afternoon....and pee'd on mommy while she was changing diapers. They never expected that would be the good news.
When he sent out group text at 11:30am yesterday, I freaking started bawling like a baby. Still get over whelmed thinking about it. As of Saturday when they left, there was absolutely no sign that his guts were functioning.
They got back to the room about 9am this morning...Alex had another BM over night...nurse said the surgeon was real surprsied that his intestines started working on their on. Alex's specialist came in a little later and was also surprised. John said the doc sounded like he didnt know what to do next. G
Megacystic (distended bladder) Microcolon (undersized colon) is what the genetic test was looking for. Thats what I googled back on August 9th and got sick and shut down google searches.
Its a gentic disorder....worse case, baby dies in 3-6 months...best case, further surgery can help enough to send child home but long term prognosis not good...they tend to stop thriving in late teens and 20s. I told my daughter I would have been OK if Alex had to get an outside poop bag, as long as he could go home eventually.... the gastro rehab team came by last friday and was discussing long term care for Alex...it was going to be a long road for that baby.
Alex still has issues with bladder....may not be empting out completely, but we now know that his guts and bladder are functional. We cant rule out more surgery, but like my son said yesterday, this changes everything.
Thank you all so much for your prayers and thoughts.
Hopefully, Alex has turned the corner now. BB
