After playing really hard, I was soooo worn out....
So, this chair is pretty cool, wonder if I could take it home?
Playing with new balloons and bear I got today!!!
Trying to set up and play with physical therapy, but still need some help
Seriously mom, the camara again? I am soooo tired....
As before, playing with PT and my new blocks from cousin Sophie
Trying to play, without setting up......the easier the better :)
I had a good day today. I tried staying awake for some time, but did fall asleep every little bit for about an hour at a time. I was more awake than yesterday, which is great! I was able to last 4 hours on my cpap trial this am and did great, no dips in my oxygen. Mommy and I read a book for a while, and I fell asleep. That is ok, I just wanted her at my bedside. :) They turned down my ativan medicine a little today, which I did well, no withdrawl symptoms shown from the change, I have a lot further to go down on. They said that if I am good this weekend, then they may decide to let me do a trial where I am just on oxygen, no pressure support. SO, I am going to try and be really good. Also, depending on my weekend, they may take out my arterial line that measures the pressure in my heart, since I am doing well. We will see. They have stopped doing chest xrays for now, since I am stable in my xrays and I no longer have the ventilator tube in. Also, my labs are just once a day now, since I am doing better. I played with physical therapy for a little bit this afternoon and enjoyed it. She tried helping me sit up, at first I was a little hesistant with her, but then I realized she was fun, so I played with my blocks and new balloons and bear. :)) After about 15 minutes though, I started to get tired again and had to stop playing. She then moved me up in my therapy chair that helps me strengthen my trunk area. At first I was not sure about it, but I enjoyed it soon after. So much, that I ended up falling asleep in it for over an hour. This evening, I did another cpap trial for 3 1/2 hours and I did good again. No problems. Tomorrow they may just turn down to assistance of just the cpap during the day if I do well. Wish me luck! My feeds are now at full goal of 40ml per hour and my TPN and lipids are off. Hopefully I will tolerate everything. I finally pooped today, which is great since it has been a week!! Mommy got to help with my trach care today and was able to see what she will have to do when I go home (if I have to go home with the trach). She did well too, because my tubing fell off today and she was able to re attach the device on her own, Go mommy!! So, now they are settling me in for the evening. My favorite respiratory therapist is in here now, doing my nightly suction in my trach, I just don't let anybody come in and do this you know :) I hope to settle in soon, daddy is sitting with me now watching Wow Wow Wubzy. Uh oh, I got a little sick just now, but everyone came in and got me all cleaned up. Hopefully no more of that tonight. My mommy will keep everyone up to date on my status. Keep praying and thinking about me. I am going to go now so mommy and daddy can get some sleep. See you later.