Update #89 on Kevin: Movement and Moving?

Two things in this update, that I don’t want you to miss….

A) Kevin’s movement and
B) Insurance trying to move Kevin (as early as tomorrow)

I’ll divide the update with dashed lines to find the beginning of each item.
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Kevin was sitting in his blue neuro chair and I got up to go buy lunch tickets from the front desk for the cafeteria. We had turned Kevin so his chair was facing the direction of the TV, but he still would have to cut his eyes to see it. Respiratory had put the one-way valve on Kevin so it was easier when Therapy put Kevin on the tilt table. I went over to Kevin before stepping out of the room. He was in an alert state and I started talking to him. He was looking right at me. Remembering that Kevin can make sounds when the one-way valve is on, I asked him some questions, while holding his left hand. I leaned in because if he was trying to say anything, I couldn’t hear it. It looked like he was mouthing words and trying to say something. I put my ear in front of his mouth and I asked him, “what?” Irregular movements of air came out of his mouth. I felt the heat from his breath on my ear. It surprised me. The air stopped. I looked him in the eyes again and asked if he said something. I turned my ear to him again and I felt air coming from his mouth. It was not rhythmic, like breathing in and out. It was forced air in rapid and varied patterns. Sometimes, I strained to listen, as I continued asking him. It felt like he was really trying to say something. Sometimes, I heard the semblance of words in hushed breathy tones. Did I really just hear that? Was he trying and just not able to produce the words just yet? Were neurons in his brain firing and synapses connecting that were dissevered till now?

I called Angie over, because I wanted more verification. I told her, I think he’s trying to say something. We tried giving him words to repeat. Hi. Hello. Yes. No. If he repeated those, we aren’t sure. It was quiet. But his lips were moving. His tongue was active. Air was coming in unpredictable bursts from his mouth. I felt a squeeze on my hand that was holding his. I looked over to Angie and said it feels like he is putting pressure on my hand (in other words, trying to hold it). I looked at him and asked, “are you squeezing my hand?” I felt the slightest bit of a squeeze from his pinky, and maybe pointing finger. These squeezes pushed my hand against his thumb that was not going anywhere, not allowing my hand to be released. We asked him to release my hand. I, then, was able to remove my hand. I put my hand back in his and asked him to squeeze it again and I felt something again, including the tightness on my hand. We asked him to let my hand go. This time we had to repeat the command a few times. I could then remove my hand again.

We looked down and saw his right foot moving. The toes were actually moving around too. Not like a pull or constriction, but as if he was moving the toes around and stretching them out. This continued for some time, pointing them down and pulling them back up, interspersed with moving them, his foot and calf around.

Then Angie asked him to do something. She asked him to make a fist. We saw twitches in different fingers. First the thumb, then the pinky. It appeared that Kevin was trying with everything in him to comply with our request. Soon, his hand that was outstretched was balling up, with fingers curved in.

We then asked him to straighten his hand back out. We saw a couple twitches on his fingers. It looked like he was trying. We saw his thumb move a little then straighten out. After, a few seconds he pulled it back in as he moved his hand a little more. We then helped him straighten his hand and repeated the request to make a fist. He seemed to move his fingers again. So we went and got the nurse on duty so that she could see it. We showed here and spoke with her about it all. She saw his foot moving around.

She told us that he pulled his head away this morning, when she was trying to put his eye ointment in it. And Respiratory saw with one of us, that when she came in this morning and told him good morning, he awoke and kind of stretched out his arms, neck and body, like when you are waking up in the morning. The past couple days, he has also turned his head toward someone speaking to him. Signs of change?

The last two days (as well as last Friday), they raised Kevin up on a Tilt Table. Today the whole process took about 45 minutes. Withstanding being raised up over a 45 minute period, with no blood pressure or O2 dropping and heart rate not increasing is a great feat. It’s also one that helps moves Kevin into the next level of sub-acute rehab. This doesn’t include the amount of time that Kevin spends in his blue neuro chair alongside the range of motion done to him while he’s in it.

By the time we went through all this, the cafeteria was closing, so I picked up some lunch at Harden’s Hamburgers.
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Around 4 PM while I was finishing up this email, the Case Manager for Meadowbrook found me in the cafeteria (can’t access internet anymore in Kevin’s room). She said she spoke with one of the skilled nursing centers that we had said could do an assessment and that insurance would probably be moving him tomorrow. I was taken aback and asked about the sub-acute rehab center that we were checking into. She said she has been calling them every day and that she wasn’t getting called back. Although she had already told us that they would come and do an assessment. Apparently, this was not being done quick enough and the insurance could hold on no longer.

I told her it didn’t make sense to move him, only to have him assessed and accepted a few days later. She had also told us several weeks ago, that she would be able to get us a few days notice. I asked her how the night before was a few days notice? She replied that she thought we were under some kind of understanding that we were just waiting for insurance approval and he would be discharged. I told her that we were most definitely not under that understanding. That the last couple weeks have been no different than the week to week approval since day one. There have been several weeks where she did not come in to tell us for a few days after the fact, that the insurance had in fact approved him for another week (by that time it was only 4 more days instead of an actual week). In a couple cases, she never came in and told us whether we were approved or not. There was a family member or friend in Kevin’s room since the first day we were here. She told me a few weeks ago that she did not have my cell phone to get in touch with me when she was leaving messages for me with other family members, while we were visiting one of the thirteen facilities we were visiting. I asked her how this was the case, since I gave all of our families’ contact numbers on the very first night we got here to the admin department. I know that I am venting, but she has not been very helpful.

As soon as the conversation was over, I talked with a couple people, As it sits, I put in a call to Kevin’s general doctor here at Meadowbrook and am awaiting his callback. In the past two weeks, Kevin has started having eye reflex in his eyes, more slow movement in his limbs and head, progress with heart rate, several opportunities raised up with the tilt table, and continued time in his neuro chair. Where is he going to get the neuro chair at a Skilled Nursing Center? Where is he going to have a Tilt Table? We have many questions and very few answers.

Thanks for reading, and thank you for praying!!!!! Please pray as we head into the next phase of the battle over Kevin’s recovery.

Thanks,
Matt, Angie and family
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http://www.prayforkevin.com/