The Child Life Specialist came in to Ammon's room Friday afternoon and gave him a new toy - a Kazoo. I smiled and thought it was nice for her to do that, but didn't really realize that it was a great toy! We taught Ammon how to use one and then he and I took turns playing it and guessing what song we were trying to play. The reason it is such a great toy for Ammon is that it helps clear out the junk in his throat. Since he can't cough very effectively, stuff seems to hang out in the bottom of his throat and he needs to clear it out one way or another. When he is rattling inside, he can't make very good sound in the Kazoo. It really helped him that night because the rattling was particularly bad on Friday night after they used the Cough Assist machine on him. He got mad at me because I kept getting after him to cough more. He finally broke down and began to cry saying that he was trying and just couldn't get it done. That's when I got the idea to give him the Kazoo. It calmed him down and finally became a fun activity.
This weekend has been a waiting game since he can't sit in a wheelchair without the physical therapists who transfer him in a particular way. I got his own wheelchairs up here on Friday but the wheelchair people wanted to wait until the body brace was done before sitting Ammon straight up while they make a new back for his chair. We hope that will be done on Monday so he can get up and be a little more mobile. He has been completely bored this weekend.
He will also have x-rays on Monday so it may turn out to be a busy day. Unfortunately, I have to go back to work on Monday and won't be here for all the fun. :)
Dr. D'Astous and Dr. Santora both play musical instruments and promised us they would perform for us. They will be in on Monday to play the fiddle and mandolin for Ammon. Dang! I will miss that, too. The last day we were in the PICU at PCMC, a respiratory therapist we had never worked with came in to give a last treatment to Ammon. The first thing he said was, "Your doctor is one that I know because I play in a group with him." Apparently there are a lot of people that get together in downtown SLC and play instruments. It is not an official organization - just people that love music. This man played the bass guitar for years (still does but not in this group). He plays the Irish flute. We talked about it a little while he was working on Ammon and then he left. About five minutes after he left, he came back in with his Irish flute and played a little Irish song for us - right there in the PICU! It was a classic moment!
I think Ammon will end up going home with oxygen. It may take a while to get him weaned off it. He does quite well in the day on 0.25 liters, but it really drops (to about 70) during the night when he is quiet and breathes lightly. We have it set to 0.5 liters right now and it dropped several times in the night. Once he is sitting up in his chair, however, that may change.
The doctors haven't given us a time frame to take Ammon home, but the earliest possible time will be next Friday or Saturday. We'll cross our fingers but I'm not banking on it. We'll just have to see how the week goes.