We’ve been on a bit of a roller coaster ride the last few days.
Turns out John had pneumonia pretty badly. He’s gotten a lot better over the last week. He’s also starting to get more movement and expression in his face and his swallow has greatly improved. This means that he can slowly be reintroduced to very soft foods and work his way up to the more “advanced” foods and eventually come off the feeding tube.
He got a great improvement in his communication methods this week. He has been using a communication board that has the alphabet and then pictographs depicting common things that he needs. He was using a mouth stick to point to words but it was heavy and he tired. So they taped together a couple of super lightweight throwaway spoons (so low tech) to work as a pointer. Problem again, he would fatigue, had trouble indicating that the board was too close, too far, etc. His assistive tech specialist has been working with him on various levels of tech and came up with one I thought was completely nutty but that completely works.
She got him a pair of glasses frames and affixed a super lightweight laser pointer on it. Then, she enlarged the communication board to about 10X17 and glued it to a poster. She setup an easel and a table for the easel to sit on and helped him figure out how to work it. This method works beautifully. It is wonderful to finally be able to communicate with him without tiring him out.
Then on Friday I got the best surprise. I was in south Georgia visiting the kids. They are in theater camp working on a production of Shrek the Musical and having a blast. I had just gotten back from dropping them off when I got a phone call from John’s speech therapist. She wanted to know if I could talk to JOHN! He was getting his volume tested and would be off the vent for a couple of minutes and was using a speaking valve on the tracheostomy. Luckily, both of his parents were there so they got to talk to him too. It was so sweet to hear his voice and to hear him tell me he loves me.
Part of the whole Shepherd Center experience is family training. They start training almost as soon as you get there. The idea is that you have plenty of time to learn and practice what you need to know before you go home and have to actually do it on your own. We still don’t know what John will need when he gets home. Will he be able to stand on his own? Will he have a power chair or a manual or will he be able to stand and use a walker? Will he be able to attend to his own bowel and bladder needs? Will he still require tube feeding? Hopefully he won’t be on a vent (they don’t like to send people home on a ventilator) but even that needs training just in case. In our case, I have to basically learn everything and then I can selectively decide what I can forget.
To this end, there is a 9 hour all day training session that family members are required to take that gives a basic overview of the care of someone with catastrophic injury or illness. The topics are very broad and they try to talk about them in context of the students and their loved one’s injury/illness. After that, you can start working with therapists for hands on training with your loved one. I completed the training last week (and then that night did a sleep study – I was completely exhausted from the all day training and had no trouble going to sleep!) and will be doing one-on-one training this week for John’s respiratory care. I don’t know what that all entails yet. I’ll let you know.