Tonight the four of us were in Steve's room and he indicated that he wanted to write something. The OT therapist had given us some foam that wraps around a pen, and we bought a gel pen that's easy to write with, so the task for Steve became easier. We also have gotten so good at predicting what he might say that he often doesn't have to write the whole word before we figure it out. For example, he might write a "c" and we guess "can" or "could". Well, tonight we were getting so good at that that he looked at us in total amazement that we were so brilliant. It was hilarious. It was almost as if he was thinking that we were smarter than he ever imagined! As soon as we guessed the correct word he gave us a thumbs up before going on to the next word.
In any case, the notes tonight were "Can you get me a wet washcloth", "Can you please take off my socks", and (our favorite) "Something is irritating my lower back". We were struck by the fact that he wrote in complete sentences and that he was so polite. The issue with his lower back was that a dressing had been put on his tailbone to protect the skin, had fallen off, then put back on incorrectly.
We are so thankful that we are able to communicate with him, and it clearly is a relief to him that he can tell us what's on his mind.
Steve is also aware of the things on his body that are strange to him, like his feeding tube and trach. Yesterday he wrote "I don't need the tube" in reference to the feeding tube, so we explained what it was and how long it would be there. Today he touched his trach and became upset. Again we explained what it did and told him it would be out soon, and that seemed to satisfy him. I'm sure those are challenging things to understand, and we're grateful that he can make sense of them.
Good night!
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8 comments:
This is going to be such an exciting week for Steve and all of you. To be able to write a complete thought? AMAZING!! We are truly blessed!!!
Have to share a "Gailism" (my brothers know what I'm talking about).
On Saturday I wrote a note to Steve that said "I love you munches". What I meant to say was "I love you bunches". As I put it up in front of him to read, he just looked at it and then at me - he knew exactly the flub I had made.
Way to go Steve....
Love, Aunt Gail
ONCE AGAIN, WE ARE GLUED TO THE BLOG FOR THE NEXT EPISODE OF STEVE'S PROGRESS!
YOU'RE AMAZING , STEVE!
(YOUR FAMILY IS TOO!)
LOVE YA,
AUNT KATHIE
Hi, Ryan. I wanted to thank you for your good idea about Steve posting on the blog. They actually have a department here that has things to help people communicate. We'll check with them and see if they have anything that can help Steve!
Love,
Aunt Linda
Aunt Linda,
Is Steve still in a coma? We won our baseball game last night 7 to 5 and are now in first place.
Ryan
Hi, Ryan. Yeah for you and your baseball team!!!
We are finding out that a coma is a weird thing. There are many different stages that people go through before they are well again. Right now Steve is very awake, writes us notes (although it's hard work for him), watches TV, etc. But he can only move his feet, his legs a little bit, his hands, his arms a little bit, his head a little bit. He can give us "thumbs up" and wave to people, but it's hard work for him. Therapists are working with him every day to help him do those things. They are also helping him talk. Today he said something and I asked him if it was "Mom" and he gave me a thumbs up! Yesterday he said "Hi, Dad". His speech is not clear, but he is trying very hard to get better at it!
I'm glad you had a nice vacation!
Love,
Aunt Linda
Like I said before...."Yeah Come On", Steve you can do it and are doing it....everyday you are making progress....it's a miracle, truly amazing, and if you or anyone dosen't believe there is someone or something bigger and better than we are...look at what has taken place in 7-8 weeks, which seems like an eternity but for what has truly transpired it is not really that long. I am sooooo happy for you and the entire family....all the prayers, and suggestions and thoughts on a daily basis. Thank God for this Blog to keep us all informed.
Linda, or maybe Beth I too wonder when someone is "out of a coma", as well as how long he needs the Trach in and can he breath without it? I can understand the feeding tube as he probably can't chew (maybe he can), but from a nutritional standpoint. But how can he talk more if he is trying to with the Trach in? Love and prayers to all of you and your in our thoughts on a daily basis, and it is soooooo exciting reading this daily to know what is happening, good or not so good. Thank goodness Rick set this up...
Aunt Cheryl and family
Hi, Cheryl! They downsized Steve's trach last Friday and have ordered a plug for it. He'll use the plug during speech therapy for awhile, then it sounds like they'll plug it for a few days and see how he does. If he does OK they'll remove the trach. In speech at the moment the therapist covers the opening with her finger when he's trying to talk. He breathes "over the trach" but we do have to keep an eye on his pulse-ox level anytime they block it. The issue of coughing also comes into play when you have a trach, as it's harder to cough with a hole in your throat, but it does give stuff in his lungs someplace to get out. So all that enters into the timing of the trach removal. They are watching his swallowing, too, as they decide when he can start trying to eat. Today they said his swallowing "mechanism" seems OK, but they're not sure he can maneuver his tongue correctly to move food around in his mouth yet. They're keeping an eye on that issue, and I'm sure he'd love to get rid of his annoying feeding tube!
Take care!
Love, Linda
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