Alistair's nurse, who was new to us, remarked at one point today how busy he is. There was always someone in his room working with him. We have Occupation Therapists, Physical Therapists, Respiratory Therapists, a Massage Therapist, Neurology, Cardiology, and Childlife Specialists...not to mention the 5 of us, Gillian and today Gillian's cousin Alexis and her Dad, Pat, came to visit today. No wonder the kid passed out around 7 and didn't really seem to care we left for dinner!
Alistair slept so well last night. Seth stayed with him and was surprised at how much sleep he was able to get. They started Gabapentin last night that was meant to calm his tremors to be able relax and sleep soundly. It worked like a charm. He didn't get up until almost 9am this morning. He has a long road to go to catch up on his sleep, but it was so nice for him to get some sleep. Once he was up and at em, therapy became the theme of the day. Along the way he had a peripheral IV put in so he could get rid of his central line. He had his last chest tube pulled this morning and then eventually his central line was pulled. So now the only thing he has attached to him is his NG tube and his nasal cannula. But both of those items can be taken off as needed to allow him to get out of bed and do other things.
Alistair did more work on the tilt board today, which gets him to a standing position. He didn't get all the way to up and down standing, but fairly close. Tomorrow OT is going to do a swallow test to see how he does eating. They are concerned with him aspirating, which is a valid concern! The only time he has coughed after intake is with a straw. But they decided to play it safe until he was less sleepy and more alert. Popsicles are okay as it is such a slow method, but hopefully tomorrow will allow him to have pudding, ice cream, etc. Once he gets the okay to eat things as tolerated, sky's the limit. We just need to get him calories and fill him up. Between getting him more sleep and getting him more calories, we should really start to see some improvements!
We went outside again today. We ventured to the Peace Garden as we could see the helicopters come and go from the hospital roof. Alistair really seemed to light up seeing them fly over. Pat and Alexis joined us and Alistair watched Alexis and Gillian run around together.
We decided to go back to the house tonight instead of one of us staying. Initially it was so we could eat together. But then we decided it would be beneficial to Alistair to be able to have a quiet night to sleep without a lot of distraction. I do feel a little bad that one of us is not there, but we need to have a mental break too. I mentioned to some friends tonight that I really enjoyed being inlcuded on a message strain about neighborhood chatter about a house going up for rent. It was nice to talk about and think about something ELSE. Days and dates don't matter, they all go together and tomorrow is a day and nothing more than that. All our discussions revolve around medical discussions and things pertaining to Mayo, Alistair and being HERE.
Tomorrow we were supposed to fly home. I wish we were. It is hard to be away from home for so long, especially when you aren't having any fun. I was telling Gillian this morning that it was hot at home and our house was probably hot and stuffy and I really wished we were home to complain about how hot our house was! I she thinks I am a little off my rocker!
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