Today as I went to the hospital, I had braced myself. The doctors did not seem very hopeful and yesterday Doug was not doing as well as the day before.
When I arrived the Speech and Language Pathologist was working with Doug. She had done the swallow test with Doug the day before and he had not passed it. Today she was working with him on swallowing. She was placing tiny ice chips on his tongue. She was working with him on tongue movement. Doug was much more alert today. He was looking at her and listening to her. Me, forever being the Special Education teacher have worked with lots of students who need swallowing support. I immediately started giving Doug verbal prompts to swallow and to remember to close his lips. Then he did much better. Then of course I was using my teacher voice. :) The best part of the consultation, is that I could see what she was doing and then the rest of the day, I worked with Doug on the same thing.
The next person to arrive was the Occupational Therapist. Today was a different person than we have had in the past. He was very good. Finally I felt we had someone who was more goal oriented. He was happy to teach me the things he is doing so that I could do the same thing with Doug many times throughout the day and not just for the 20 minutes the therapist is with him.
The same happened with the PT. However I don't see that the PT is as goal oriented. It seems he is more interested in just providing 15 minutes of range of motion. I am not as worried about that right now, because the recommendations that the OT gave me will help with Doug's lower body as well.
I have been asking about sensory and motor integration and have not gotten a good response until today with the OT. Doug does not have any movement below his neck. The diagnosis is polyneuropothy. This may happen with people who have been intubated for a long period of time apparently. It is probably also complicated by Doug's weakness from the MS. From my experience, people who appear to lack body awareness and or movement, is that you need to do more sensory exercises with verbal prompts to help the person to experience their body and to help them know where their body is in space. You verbally cue while performing the exercise on the person so that the brain is connecting to the movement. I was reassured to find that the OT knew exactly what I was talking about and taught me some things that I can to.
All morning, Doug responded to the therapists; meaning that he tried to communicate. This is much better that the day before. In the afternoon, Fr. David, our son Dan and Doug's brother Dan stayed with Doug so that I could go to the bank and get my hair cut and colored. This is the first real break I have had for 3 weeks. Dan texted me a few times while I was gone trying to figure out what his dad was saying. Once he told Dan he wanted a beer and then laughed. This was amazing that he said something funny!
Today they restarted the Clinimix that will provide Doug with nutrition until we can find out if he can develop the swallow and avoid a feeding tube. The nurses are continuing to work with Doug, changing his positions frequently to avoid bed sores, keeping his mouth moist and monitoring his vital signs along with his breathing. His heart rate was down today. His blood pressure is still a little high, but his respiration and oxygenation level is looking better.
Today is more hopeful. But we are a little sad as well. Dan and his two kids are leaving in the morning and so is his brother Dan. I will miss having them here and all the support they have provided.
Some news about me. I got the MRI for my knee yesterday and picked up the report today. It is a little more serious that I thought. I have a torn meniscus, edema, sprain and some thinning of the cartilage. I have an appointment to follow up with the Orthopedic doctor.
Today we pray:
Holy Lord, we watch for the light. Look with favor on your servant Doug. Continue to provide him strength and courage to face each new day. Support all that care for him, so that they may have the tools and skills they need to heal him. And Lord, we pray that you will heal his body so that he might feel and move his limbs. We pray that you will heal the muscles in his throat so that he can swallow and speak clearly. All this we ask in Christ's name. Amen.
No comments:
Post a Comment