As I write this, Magnus is getting his first feeding of milk through his G tube. They started using the tube this morning, but have previously only given him pedialyte through it. They've also been letting him drink milk by mouth today, which seems to have improved his mood significantly, although he's still not back to his usual happy self.
Yesterday was a pretty rough day. He was mostly asleep, but when he did wake up, he screamed inconsolably. It took a long time for them to get orders from the doctors for him to get any pain medication. First they gave him oral morphine, which didn't seem to do anything for him, and then they decided to give him IV morphine, at which point they discovered that his IV had infiltrated, and his poor left arm was swollen up like a balloon. However, once they got the bad IV out he was immediately much more comfortable and fell asleep...so deeply asleep that he barely stirred when they put in his new IV!
Since he wasn't allowed to eat yesterday, they continued to give him IV fluids, but I noticed that he hadn't been peeing much. This made them worried that he was dehydrated, so they tried giving him more fluids, but he still didn't pee...he just got all swollen and bloated. The bloating got worse overnight, and I spoke about it with all the medical personnel I encountered, but nobody really seemed to take it seriously until this morning, when our regular cardiologist stopped by. She got the team to order him some diuretics, and also told us to prop him up in bed, since most of the swelling was in his face and neck. Nobody knows why he got so swollen, but they said maybe from the IV fluids. Since then, they've given him doses of IV lasix, and he's looking a lot better, but still much puffier than normal. So hey, at least now he looks fat!
I stayed over at the hospital with him last night, and I actually got a pretty good amount of sleep. Magnus slept almost the whole night through, thanks to my asking the nurses to give him morphine every 4 hours. I just wanted him to be comfortable and rest, and also didn't want to have to worry about him pulling anything out while I was asleep. I am especially worried about him pulling out his G tube, which is possible. When we go home, we'll be able to keep the tube covered up and out of temptation's way by dressing him in onesies and one-piece outfits, but here in the hospital, he just wears a diaper, and the nurses like everything to be out in the open where they can see it (which makes sense...part of the reason why we didn't realize for a while that his old IV had infiltrated was because they had covered it up with a lot of tape and a "spiderweb" bandage to prevent him from messing with it or pulling it out).
So he seems to be doing better now. He hasn't had any pain medication since 5 a.m., and while he hasn't seemed very happy, he hasn't been too fussy, either. I think getting to eat again has helped a lot. I also suspect that he'll be a lot more comfortable once we finally get all the excess fluid off him. I myself had terrible edema after giving birth thanks to my preeclampsia, so I know how uncomfortable it is.
6 months ago