by Monday evening – this little guy got to come back home. We weren’t expecting such a short stay, but in reality all they were doing at the hospital was monitoring him, and aside from increasing one of his blood thinners, there really wasn’t much else they could do. In the end it made more sense for us to go home and watch him there.
Yesterday big sis came home and got to spend time at home with her brother for the first time. She was a little stand-offish at first and more concerned with her own space and things, but by bedtime she wasn’t in the mood to really leave his side.
Today she made a new friend. We have new neighbors and they have a kid around her age. I’ve wondered how the other kids were going to react to AJ — especially at Averies age where they may not really understand. When they came inside to play, Averie told her that her brother was sick and needed to breathe through the trach in his neck, and they both proceeded to tell him how cute he was and then ran off to play. Later at bath time her new friend asked about his scar and Averie said “Oh, he had heart surgery a couple times”. Her friend asked “is he ok?” And Averie said “oh, he’s fine now” and ran off again. It may not be completely accurate to say that he’s “fine”, but having that sort of ‘normal’ interaction with someone who hadn’t seen AJ before was much needed, even if she was 6.
We’ve had a few shifts of home nursing now, which has been an absolute blessing. The nights we don’t have nursing are a bit crazy and restless, but they are doable. Daytime we will absolutely need our nurses to make it feasible for us to go back to work — AJ can’t go to daycare like an average baby, so we really need daytime nurses we can trust to look after him. AJ comes with a little bit of a learning curve, but i like to think he’s lovable enough for folks to pick up on his quirks and want to stick around – though I may be biased. His daytime nurse the last couple of days got in quite a few snuggles, so that’s always a good sign. 😉
Aside from that, we don’t know what the long term effects of his stroke may be yet. He has started moving his left side – though it’s not regular or anywhere near the coordination level he had prior, and he definitely still has a very crooked smile, but we are all pretty confident he will pull out of it. Only time will tell!
Tomorrow he has a new nurse during the day who is going to get stuck in the car with Averie, AJ, me and my music for AJs first Dr visit on her very first shift. Just a standard check up and an extra blood draw because of the changed levels of his blood thinners. Wish us luck!! Eek!
A few people have stepped up to donate again, and I really want to say thank you. Both to those who donated before and those who continue to. Insurance may pick up most of the tab when it comes to surgeries and tests etc, but not everything is covered — and I can only imagine what our electric bill is going to start to look like with the oxygen compressors and all. Nevermind the general going home expenses — cleaning the ducts and carpets, supplies like alcohol swabs to storage sorting units… containers and labels all over the place…. It’s crazy. And we appreciate every little bit of help more than you all can imagine. 💕
Ok, off to sneak in a bath before the night shift starts! Please keep praying that the blood clot in AJs brain doesn’t travel and block something elsewhere in there, that we hopefully get to continue to stay home for a longer chunk of time this time, that his nurses will be patient, understanding and loving, and that we will find our new sense of normal soon.
