Today Greyson was another first for Greyson. The first time someone who is not a nurse took care of him for a the whole day. Since we couldn’t cover all the nursing shifts one of our friends from church said she would help out. She has a background with medicine and has EMT training but never took the final few steps needed to become a nurse. Anyway this summer she came over and spent time with us learning to care for Greyson and today made her solo debut. Everything went well and Greyson behaved himself well.
So Monday we went to the Dr’s again. The neurologist said he was doing well, but needed to catch up in a few areas (pretty much what he says everytime) and the pulmonologist said he was doing well. It was decided that we should try Greyson on a big boy trach so he no longer has the trach that sticks out so far from his neck. This is good and bad. Good because it is a non cuffed trach which means he is doing well. Good because he can’t grab this one as easy (he wouldn’t keep his hands off the other kind and we were really getting worried he would decanulate himself as he was pulling on it alot). Bad because it is not as easy for us to work with, and bad because he doesn’t have a lot of neck and seems to be pushing it off to oneside more than his last one. We will get it figured out though and Greyson doesn’t care at all so it will be OK.
He got a new passy muir valve since his last one was not working correctly. It quit working last Friday so it has been really nice hearing him again. He also got off one of his diuretics so now he is just on one. If he continues to do well in three weeks we will discontinue the last one (YEAH!). There weren’t any changes to the ventilator as basically the idea now is to stay where we are, let him grow and get stronger, and go into winter. He still needs oxygen most nights so while he’s doing great he still has some healing/growing to do. The big test now will be to see how he does if he gets a little cold. While we will be doing our best to prevent him from getting sick, seeing how he does with a little cold this winter will be a great indiciator as to whether or not he is ready to be completley vent free. Lord willing he will make it through this winter and continue to do well. If he does we can start talking decanulation (removing the trach) early next summer.
He had physical therapy today and the therapists felt he is advancing nicely. He is still behind in some of his gross motor abilities, but most of the things they are looking at he can do, he just chooses not to do them very often (like say when the therapists are here to evaluate him!). We will continue to work with him everyday and enjoy seeing the progress that he makes almost daily.
OK so I hadn’t updated in a couple days but this was pretty long, so I think we’re even!