Sunday we were moved to the floor around 4:30pm, it was a pretty quiet day and Gracie literally slept from 3pm till almost the next morning, waking up only to vitals. I still can't believe we are on the floor so soon! Part of me keeps holding my breathe for some big set back. But really Gracie is doing great considering she just had heart surgery a week ago.
Yesterday was perhaps the busiest day anyone can have on the floor. It wore me out as well as Grace. It's no wonder she is stii asleep, her crazy day allowed for hardly any nap time. We started the day at 5am with morning labs and walking down to x-ray. We came back and watched some Mickey Mouse (no day can start without this). Gracie got out of bed at 8:30am to try walking again, she did great and walked for about 20 minutes (we just held her hand to stabilize her). Walking back to her room we were greater by physical therapy, they played with Gracie for a couple of minutes then we went back to rest for a bit. During this time, we found out that the swallow study we had schedule on Saturday had been cancelled because there were no speech therapist working. I just wanted to cry, all Gracie has been asking for is water and she has to wait a day because no one was working, ugh!
Conveniently while the doctors rounded at 10:30ish, a speech therapist walked by and Annie, the NP for cardiothorasic surgery, knew she was a speech therapist, so they were able to convince her to squeeze Gracie in. I was thrilled, I don't know if there ever was a more excited mama to take her child in for a swallow study. The first sip of the barium drink caught Gracie off guard, but then she gulped down six sips of the barium drink (I guess at this point she didn't care what she had to drink as long as she got a drink). It appeared as if she did great with the swallow study, but 10 minutes after we got back to the floor the speech therapist called and said Gracie ever so slightly aspirated with that first taste, that she needed to take it slowly and could only drink teaspoons of water for now. So I spend most of my time spooning her water--it's not that bad since she sabots every spoonful.
Immediately aftervwe came up from doing the swallow study, Gracie got some loratab and we went down for 1 1/2 hour echo. After which I tried my hardest to get her to nap but she refused, so I took her for a little wagon ride that ended in the playroom for about 20 minutes. By the time we got back to the room and settled, she was ready for bed at 7pm. But that didn't last, she woke up 15 minutes later. I eventually got her to sleep and she did ok through the night.
Today it hasn't been nearly as busy. We went for a morning walk after x-ray and a little nap, then we went down to the physical therapy gym to play, got a 24 hour halter monitor placed and is now sound asleep.
I am so grateful that this round has been so much more improved than other the othe surgeries, but even this stay is hard and I find myself just breaking down and crying.