Up and down day

Well things were going fine yesterday until morning shift change. For the first time in a few days someone had lifted up the bandages over the Monti (bladder port) and we realized the adhesive from Charlie brown’s bag had not been sticking and stool was getting into the Monti. I lost it. If a professional ostomy nurse didn’t get it right then how will I?? When they moved the Monti in the third surgery they put it so close to the ileostomy that now it is hard to get the adhesive to stick to her skin because we have to cut a spot out of it so it doesn’t cover the Monti. The nurse finally found a smaller profile bag that is working for now but it is not covered by our insurance…. Of course. Not sure what we’re gonna do about this issue.

The NG tube came out this morning. There has been some confusion so I’ll clear it up, the NG has not been to feed her. It was for suction out her stomach and keeping it clear as everything backed up out of her small intestines. So since everything that has been coming out is clear, they “think” the small intestines is better. They “think.” She is been fed by TPN through her centra line for the last two weeks, straight into her veins.

I put my foot down and made some rules for the doctors. I will now only talk to her original surgeon and am only allowing him to make the decisions. Every time the residents, fellows or even other surgeons say something about making a change I say I’ll consider it and discuss it the next time I see Dr Burns. There were way too many people coming in and out and having their own methods and opinions. One doctor thinks it’s a lot of output and another doesn’t. One doctor has seen her a lot and I knows that her tummy is bloated and then another just thinks she’s chubby. One doctor takes it upon himself to say she’s just crabby or sick of being in the hospital instead of letting the mommy know the difference between her baby’s cries. I’m done with all of that.

So the plan for today and tomorrow is continued rest. Monday Dr Burns said we might get an X-ray and possibly a contrast study to see how her intestines looks and then maybe start feeding….. Slowly.

So I’m done blogging until Monday afternoon probably. My big kids are here and I’m going to focus on them and let Jack sit with Laila and be bored :) Please do not panic if I don’t post a blog or respond to so many texts asking how she is. I’m gonna focus on these three. I miss them so much when they are gone and they deserve their mom just as much as Laila. Assume no news is good news for the next few days.

They are currently being spoiled by RMH volunteers making them breakfast :)

Thanks :)