We had an appt with Maria’s pediatrician today (we love her!). She thinks we’ve reached the time when a G-tube is necessary. Maria’s still not eating and drinking up to par (or anywhere near par), and she keeps pulling the NG tube out of her nose (do you blame her?), so I’ve had to stick it back in at least once a day, sometimes twice. It’s been rough. It’s interesting how mentally and physically exhausting all of this is for us. I can’t imagine how it is for Maria.
I really don’t know what to do about the G-tube. I’ve been fighting it for so long–6 years or more. I think I’ve been right to fight it, but maybe it’s time to give in? If any special needs parents are reading this blog and have an opinion, please leave a comment because I’m looking for guidance, but not from the typical advocates (gastroenterologists and their nutrition henchpeople; feeding therapists)
It’s hard to determine Maria’s weight with all the garb on her lower body. Before surgery, she was right at 40 pounds. At the hospital when she checked out, she weighed 39.5 lb (with all the garb, weighed with a hospital bed). At the pediatrician’s today she weighed 47+ lb on one scale and 45+ lb on another scale. I don’t believe she’s gained 6 lb in a week. Sorry. I know I’ve been shoving high-protein Nutren formula down her tube as fast as I can, but there’s no way. I weighed her at home at it was 43.5 lb, which is probably more accurate. Why didn’t I weigh her at home the day she came home? Because I didn’t think of it until today. Oops.
I told the pediatrician what happened at the hospital and she thinks I should write a letter to the CEO, that he’d appreciate the input because that’s not the kind of service they’re trying to provide. Probably should. I’m curious what type of response I’d get. Someone needs to know because it was a very big mistake / bad process, something that needs to be changed. If it happened to another child or other parents, it may not have turned out so well.
Maria’s been out of the hospital a week. I’ve been off work 2 1/2 weeks. I need to get my mind back in the game. I’m walking around like a freakin’ zombie (w/o the brain-eating part). We’re going to try and have 1 day w/o help this weekend and see how that goes.