Home again home again jiggity jig. Alyssa tolerated her food awesomely overnight…so awesomely in fact that she and I both slept for … ready… SEVEN STRAIGHT HOURS! Ohhh yes. Seriously just what we needed to be able to tackle the first day at home. As we begun the day knowing that we would eventually be discharged, we figured it would be late in the evening. It was not our first time at the hospital and it seems like we get told we’ll go early and it winds up late. Instead? We were totally home in the early afternoon. Part of me was excited but I will admit part of me was apprehensive. It was a Sunday, my roommate wasn’t coming home until late, and nursing wasn’t coming until Monday. The other part of me? Was SO ready to be home.
We headed out and geared up for being on our own. The ride home was happily uneventful. We got home, got her first pump feeding set up and things went quite well. Venting was a bit more precarious at home. Alyssa felt more comfortable and was feeling more herself so she wanted to “help.” It took a bit but I wound up giving her a smaller syringe so she could feel like me and that passed for today. We got her system all nice and set up like at the hospital, got her going, and just kind of vegetated for the day.
Of course the main worry in all of this was her pulling out her tube. Who’d have thought that the first person to give it a good tug would be me… ugh. I was smart enough to unhook her from the pump before moving it, but not smart enough to unhook the syringe from the IV pole. Luckily the lamp it was tied to fell so it made me stop. She cried, I cried, and things worked out OK. Lost my mother of the day award. LOL. Ah well. The rest of the day went off without a hitch…until… medicine time. I gave her her meds, turned to walk away, made it to the sink and turned to look at Neil. He looked like he was splattered with blood. Ah the joys of seizure meds. OK … what do we do? Well, the reality is it was not the first time she didn’t keep down her meds. So, we tucked her in, started her feed, and decided to try again in the morning. What else can you do … right? Of course I miiiight have also sent Ms. T a text with a few expletives in it to express my discontentment with the situation LOL!
Overall our first go on our own went pretty well. I’m hopeful that it continues down this path!