Roller Coaster Week (by Nancy)

It has been a roller coaster week for Steve again but it ended on a breakthrough high!

He began the week dealing with the effects of steroids that were prescribed for gout in his feet and ankles. Apparently it is quite a painful condition because he thought his ankle was broken! Anyway, Dr. Krause treated it quickly and his ankles are better and steroids are out of the picture.

Two huge improvements on the communication front:

·         Lindsay, speech therapist, convinced Steve to use the laser pointer attached to a hat as he now has the head and neck control to point to letters on the alphabet chart. Everyone who has “recorded” words as he talks says they can’t keep up with him. He flies over the chart with the laser!

·         Up until now, for Steve to be able to make sounds or speak, they had to divert air from his breathing a little bit. It was very tiring for him. However, Thursday, Tennille, respiratory therapist, was able to adjust the speech cannula that is put in the trach so that Steve can talk whenever it is in. He has been able to have it in for 5-6 hours at a time.  Most of the time, his words are clear and the voice sounds more and more like his normal voice.

Dr. Krause and I saw a muscle twitch in his forearm when she asked him to tense it up! Come on, nerves from vertebrae C 5,6,7! (I don’t really know what I’m talking about here).

Kristy, Flora’s sister, came (with her sweet daughter, Flora Mae – age 5) and visited Steve Thursday night and here is her news: Armed with two new communication methods, Steve inquired of the unit director during her visit tonight, as to whether there are other forms of technology he might try. Specifically, he is interested in trying an eye-tracking system used by patients with Lou Gehrig’s. She said she would be meeting with a member of the technology staff at the main campus tomorrow and would see what might be available. Perhaps this might be a great opportunity for some Assistive Technology Sales Reps to bring in their best products for Steve to test and review! Who better for the task than an engineer?! Even if Steve no longer needs it because of the speaking cannula, he might be able to help the unit test it out and perhaps bring on some new technology in the future.

I also asked the nurse if there was another way to find some relief for Steve’s legs which he said feel like they are falling asleep. She said we should try some leg wraps and placed an order for these that inflate and deflate with air – offering a light form of massage and also help to prevent blood clotting.  (He hasn’t had them in quite a while because medication was being used to prevent clots.) Steve said that they felt good. 

Thank you, Kristy! That's what happens when two “techie” minds are left together to think on what could be!!

And, wait, there’s more….

Steve got to go outside on the patio in the wheelchair! Tennille rounded up the nurse, aide, and the portable vent and they used the Hoyer Lift to get him into a special wheelchair so he could go. I had Charlie also so it was quite the procession! Even Brenda, unit director, came along for a bit. He was out there for a half hour, soaking up sunshine and breezes that he hadn’t felt in five months. We took pictures and I heard one of the staff say, “This is what makes it all worthwhile!”

Also, Wednesday was my birthday. Becky, Josh, and Diksha came down and we went to IKEA, where she had never been. Something there for everyone to find interesting!

They had a good visit with Steve, too. When I was there, Becky pulled out a present and card from Steve that Tim and Flora had shopped for after showing him pictures of several things. Then they transcribed his message for me on a card. A beautiful necklace, sweet message from him and, yes, tears. I got to open it with him looking on. The day ended with a nice birthday dinner at Low and Debbie’s house and a cake made by Sue. Thanks to everyone for texts, cards, and gifts that made it a special day indeed.

Love

Nancy