Intro - Short Bowel Syndrome/ Feeding Issues and a Daycare Question

gutsymama

Hi! :-h

I spend most of my time on July '13, but I've lurked here a bit. My son was born in May '13 at 34 weeks with gastroschisis, which resulted in short bowel syndrome - he lost about 80% of his small intestine, spent 131 days in the NICU, multiple surgeries; came home on TPN with a central line (Broviac, then PICC after we lost multiple Broviac lines to calcification and infection) and g-button.

He has been line-free since June of this year <:-P and after switching to a new medical team who are absolutely fantastic we are confident he can stay that way, so daycare is an option for the first time (we couldn't and wouldn't send him with a line). I'm trying to compile a list of things to ask them, but I'm not quite sure where to start - I've never dealt with daycare at all, let alone special needs DC. So I'm looking for help: what kinds of things should we be talking about?

Details on him & DC needs:

Our new NP recommended a nearby daycare that offers both "normal" rooms and a medical room that is staffed by nurses and can handle feeding tubes, trachs, offers therapies, etc - it's the real deal, not just a room for bandaging booboos; I don't think he'd need to be in the medical room full time because we aren't using his g-button much at all during the day, but it would be fantastic to be able to have them use it if necessary, and to know that someone would be there to put it back in if he pulled it out.

Our other main concern is that he's been eating pretty well orally, but he *must* get in all his calories because his gut doesn't absorb all that well and we are struggling with weight gain, and hydration is more difficult for him as well; and he's been super picky lately and sometimes takes 3 hours to eat a meal, sometimes snacks all day, sometimes I offer half a dozen things before he'll eat something, and he's still taking a bottle at 15m because getting all his fluids in him is much more important than the method of delivery....I'd need them to work with us on that, and also take it very seriously. These aren't just picky toddler issues; if he doesn't get all his calories and fluids he can easily land back in the hospital.

He also vomits more often than your average kid (2-3x in a typical week, sometimes quite a bit more) and has frequent loose stools as his norm. And common illnesses will hit him harder since he has a more sensitive gut and hydration issues (malabsorption makes rehydration more difficult).

Thanks! And I don't think I've seen any other short gut mamas on here, but if there are I'm happy to connect and offer any reciprocal support that I can.

bumpuser511563

Welcome to our board!

gutsymama

@Grace0609 Thanks! Yes, our GI team recommended a daycare that sounds amazing - it was founded by a nurse, and I imagine that kind of setup is few and far between. We are pretty lucky to have it close by. 

We had private-duty nursing for his first year, but since his line is gone he didn't re-qualify. I'm working from home until next May, but it's incredibly difficult to get anything done while I'm also SAHM full time! I'm really hoping this works out as well as I think it will. 

gutsymama

@Usm123‌ I would be our backup childcare on short notice, so no worries there. I'm finishing up grad school and spending the next year writing my dissertation, so my schedule is almost entirely flexible when it has to be, I just need more work time than I'm getting right now or I will never finish.

That's a good point about asking them to let me know if something was going around with the other kids; it seems like a pretty obvious thing, doesn't it, but I hadn't thought about asking them to do that. Thanks!