We’re to lunchtime on our first day home and it feels GOOD. Daniel is really keeping us on our toes, though! Last night Daniel was really fussy and cranky and none of us were too surprised since he has never seen our house before except that jet-lagged night before we headed to the hospital. He is telling us what he wants (it’s impressive what he can communicate without words) and quickly protests or tantrums if we don’t comply quickly. It’s a dance to be there and show him that all his needs will be met while still teaching him about boundaries. Without language, things are tricky.
Daniel is not accepting any food by mouth yet. He is having to drag a backpack around 24/7 which has also proven to be challenging as immediately after leaving his hospital bed, he’s been constantly on the move. I anticipate some sore knuckles and a sore bottom from scooting and I hope for a calming down in a few more days.
I can imagine my way ahead to parenting this new crew of five children if I don’t add in the many medical appointments in the future. Add those in and my expectations are quite reasonably, “I have no idea.”
Gut health update: Daniel has not had a bowel movement since Wednesday despite repeated doses of Senna (a laxative), miralax (stool softener), and glycerin suppositories. I think it’s going to take some time for him to learn how to have a BM without enemas. Not sure how to walk him through that without getting constipated. It’s a bit of trial and error, I think. We’re to call GI on Monday if he hasn’t gone (according to one doctor) or just do an enema (according to another doctor) and the plan for when to do these things was frustratingly vague with them saying they don’t want him dependent on enemas. Umm… but what if he already is!? Anyway, this one is going to sort out slowly over months or years, I think. Low gut motility is not unusual for some people with AMC.
Just one photo, a short video, and an intro video on AMC:
The little black and yellow and orange backpack holds Daniel’s feeding pump and formula – we also fixed a rope from the backpack to his waist so that he when he drags it himself, he’s pulling the rope instead of his feeding tube. He’s not strong enough to wear the backpack, unfortunately.
He’s getting continuous feeds, because that is easier on his body. We’re to expect continuous (or near continuous) feeds for a few weeks at least.
True to form, he’s spent all of today finding all the cords in the whole house.
Grr – can’t get the video of Daniel scooting through the hall to work and don’t have the energy to work on it. I’m trying to catch up on deskwork, insurance stuff, bills, cooking and everything all at once… so you’ll have to wait til later for more.
Try this: https://photos.app.goo.gl/GOIhaSYbMZ5PDaqH2