Tuesday afternoon they tried a trach mask for the first time. They disconnected the vent for that and only gave him humidified air and oxygen. He did really well for 2 hours. The next day they put him on the mask for 7 hours and he still did great. On Thursday they just put a cap on the trach to see how he would do and he is still on it. Everybody has been super impressed with how well he is handling the vent weaning. If he continues to do well on it they will move the vent out of the room by Sunday and then potentially pull the trach by next Friday. This is such a huge step. Scott's anxiety has been so much better since they haven't had to put the trach cuff back up. He is doing so good with talking too. It still wears him out and sometimes it's still hard to understand him, but I also feel like he is making up for lost time. I was reading the doctors note the other day (this doctor rounds at 4:30am, so I am never here and just have to catch up on his notes when I get here) and it said that the patient is very talkative. Ha! That made me laugh. The old Scott is back (he has also been interested in watching a little football, which is a big step)!!!!!
He has had a few meals of ground up foods. He is not very keen on that, but I say you can't be too picky right now:). The doctor really wants him to gain some weight, so they are increasing his tube feeds. Gaining some weight would really help him to get some more strength.
He was able to leave his room for the first time on Wednesday, which was really nice for him. Since then he has received a power chair and can navigate it pretty well on his own. Now that he is not hooked up to the ventilator it is much easier to leave the room. It still is quite the process to get him into the chair and that is very tiring and painful for him.
Scott has had a lot of questions about his time at KU Med. He does not remember much, which is probably a good thing.
My mom has been here for almost a week now and has been a big help. She has been helping me sleep train Evan. He is taking to it pretty well. I am hoping that before she leaves he will sleep through the night pretty consistently. The kids have been up to see Scott every day. Hannah has handled it so well. She is really sweet with Scott and holds his hand and cuddles with him on his bed. She has watched and helped with some of his therapy.
Here are a couple of Hannah stories. Hannah was playing princess the other night. She was wearing 3 dresses, two of my shirts, a hooded towel on her head and my shoes. Se also talks with this british accent when she plays princess. She then decided to put long strips of scotch tape all over Evan's head, so that he has long hair and can be Rapunzel. He pulled it off pretty quickly. Poor little guy (and of course I let her do it)!
We were in the elevator the other day and she was looking at all the buttons and telling us all the numbers and then she spelled all the words she could find. She spelled H-E-L-P and then sounded out like she was reading the word she just spelled and said TELEPHONE, because the help button has a picture of a telephone next to it.
Another first day of preschool (third preschool for this year)
Watching daddy's therapy
Swinging in the park