We had a great day today! Will got his cannula removed this morning, he had an experienced nurse who was less panicky about normal behavior and more willing to let him have perfectly safe dips now and then. He's had it off all day successfully! The lactation specialist came to work with us to verify how much milk he's getting from breastfeeding and fit me for a SNS device which puts a tube into his mouth and runs extra milk in there while nursing. It will take some adjusting to get working perfectly but should help us out. We also worked with the occupational therapist (Margaret) who showed me an exercise to do to help loosen up his cheeks and mouth to improve his latch, and we re-did the guidelines for his care that we wrote up a few days ago to include her current suggestions and modifications for some progress he's made. He got fitted for a new donut pillow (he's had one a couple weeks now to round his head back out, he's getting flat head) because he'd outgrown the last one. I brought in the carseat today, when he gets the gavage feeding tube out we can try him out in it to see how he does, apparently they desat more with the gavage tube in place. He'll need to sit in it with no major problems for 3 hours to pass the carseat test. We'll be switching to on-demand feeding soon, when he'll be fed when he shows signs of hunger or woken up to feed after 4 hours if he hasn't woken up by then, which is good - he should hopefully eat AND sleep better that way, but it'll make my schedule in the meantime more difficult planning pumping and visit times. He also got moved to a new room! This one has a window, so he can get used to natural light before coming home. The best estimate is that he'll be home not this weekend but the next one, if we're lucky, so keep your fingers crossed he keeps making progress on feeding, doesn't relapse on apnea and passes the carseat test!
No comments:
Post a Comment