Friday, June 1, 2012
Aww—I slept until 10:30 this morning and am feeling refreshed finally! We brought Ryder home last night and he seems to be feeling much, much better and already has most of his strength back (which is unusual for him after he is ill. It usually takes weeks before he can walk decently.) This illness/reason for hospitalization started on Thursday. Ever since his spinal tap on May 2nd, he hadn’t been acting right. He wasn’t able to walk more than 2-3 steps and needed to hold on to someone’s hand. He wasn’t having BM’s and nothing seemed to help w/that. We brought him in for an x-ray on Friday, meanwhile stopped tube feedings so he wouldn’t get backed up more. Friday night he threw up about 3 times. Saturday we had a get together at our house with some good friends & their kiddos. Ryder seemed okay. He was more mellow than usual, but ate and drank pretty well. Ryder got his 1st kiss on Sat from Ava (see pictures below :) Then on Sunday he started throwing up at night again. We ended up bringing him to PCH on Monday after 12 + times of vomiting mostly bile since he hadn’t eaten anything really since Saturday. The staff and doctors in PCH ER where beyond wonderful!!! Ryder continued to throw up after every dose of Zofran (anti-nausea) given to him. Another x-ray was done which showed moderate amount of stool impaction. He hadn’t had a BM (except a hard little one on Sat) for 4 days—which is very abnormal for him. I was so worried about Ry in the ER. I was holding him in the hospital bed and he couldn’t even lift his head. His neck would just flop back and he wasn’t responsive to much. When he threw up, we had to lean him forward so he wouldn’t choke or aspirate, because he wouldn’t move automatically. That was the scaredest I’ve been for Ryder. He was admitted after several hours of throwing up for dehydration, constipation and not being able to hold anything down. Ryder wasn’t able to eat by mouth or be tube feed until Wednesday night (imagine not eating or drinking for nearly a week!). During his hospital stay, the doctors and nurses worked so well with us as a team. I also emailed Ryder’s neurologist who spoke w/the doctors to aide in his care (I can’t tell you how much I appreciate Dr. Narayanan!!). Ryder’s GI doctor (Dr. McComber) and his general surgeon where also very involved in his care this stay. It was the smoothest communication/treatment that Ryder has ever received). Anyways, during his stay, Ry was rehydrated, given a full-extensive bowel cleanse with go-litely over a course of 2 days via G-tube continuous run. Needless to say, Les and I were covered in poop!!!!! He also had another EEG, which was abnormal (expected & same as EEG from 1yr ago). Ryder’s posterior nerve signals do not transmit signals to the rest of his body appropriately. They are slow and weak signals. Ryder was so adorable in the child life center (playroom). He loves to play doctor. There were 2 baby dolls that were Ryder’s patients. He checked everywhere for their G-tubes (just like he has). It was pretty cute. Ever since he got Button (his build-a-bear w/a G-tube) he is aware & looking for tubes on others ;) Also—Ryder is obsessed with baseball!!! Literally!! We brought him to a DBack game for Mother’s Day and he loves to play as well. Now, he watches baseball on TV!!! What 2 year old do you know that likes baseball soooo much?! I put the D-backs game on in his room for awhile. When he started looking at a book, I changed the channel to a cartoon. He immediately started fussing and signing throw & baseball. When I put it back to the game he was fine!! He laid back, crossed 1 leg over his knee and watched the game like a little man!! Each time a commercial came on he got upset and started signing again. I had to distract him as much as I could through commercials I am definitely thinking a baseball themed birthday party in September. I’d love to get him to more D-Back games and possibly on the field or to meet a player in uniform some day!!! I don’t want to bring him on the field w/lots of other kids because he does fall very easily if bumped. Any ideas on how I can make this happen? So now that Ryder is home, he seems to be getting back into the swing of things. He did throw up last night, but he stuffed too much potato in his mouth and some was caught on the roof of his mouth. He has huge sensory issues and hates texture in his mouth. A few hours later he started doing the no swallowing thing again for a long time. I’m not sure what that is from or if it could have been related to the potato insistent earlier in the evening? Who knows, but I’m hoping it won’t happen again and he’ll stay out of the hospital now!! Thank you everyone for your continued love and support. You all make each day much easier and better knowing we are all loved so much!