Wednesday, May 5, 2010

Update #122 on Kevin

Thumbs up! When we last updated you, Kevin had begun therapy at St. John’s outpatient rehab. He also started producing “ahhh” sounds and being more consistent with squeezing his hands. Therapy has continued to go well and there are many things with which to update you.

In the past few weeks Kevin has seen several doctors. He saw his general doctor, Dr. Ting, who thought Kevin continues to look better every time she sees him. She took care of some med changes and details, then made our next appointment for two months to give us a break since Kevin is seeing so many docs right now.

Kevin saw his pulmonologist, Dr. Kennedy, who changed his trach (always a little blood and trauma, but getting easier each time). She also thought Kevin looks better each time she sees him. She has been seeing him since September 2009. She was happy to hear about the “ahhh” sounds and wanted us to continue doing what we were doing with him at home and in speech therapy.

Kevin saw his eye doctor, Dr. Peters, yesterday. This is the doctor who started seeing Kevin about his right eye issue. He was incredibly pleased with how Kevin was doing. He looked at Kevin’s eyes and saw Kevin try to avoid his bright light in each eye. Angie had made a very astute observation about Kevin’s right eye. We haven’t been able to know if Kevin could see out of his right eye due to the exposure issue and trauma inflicted on the right side of his head. She noticed if you brought your finger in front of Kevin’s right eye without his left eye seeing you and placing it directly in front of his eye, he starts to blink, except not so much in his right eye. He starts rapidly blinking his left eyelid. You can see movement in his right, but it is nothing compared to the defensive reaction you see on the left. That means Kevin is able to see something in his right eye, even if he isn’t able to respond as fluidly with his reaction on the right side. In six months we are to return to the eye doctor and he plans on doing some dilation studies and tests.

Since leaving Meadowbrook back in December, we have tried to find a neurologist to follow Kevin throughout his recovery. In fact, we were looking fervently for one during the months leading up to Kevin’s discharge from Meadowbrook. Kevin’s general doctor found one, Dr. Richter. In fact, since getting him to sign on, we have found many different connections to this doctor through friends and family. We went to the appointment with low expectations since our experience so far had been abysmal with the neuro field. We were advised that the doctor was older and would take his time. We thought that was good, then we received the advise to get a book. We realized that since he would take his time with Kevin, he would also take his time with every patient prior to Kevin. We saw the doctor about an hour and a fifteen minutes after Kevin’s appointment. We couldn’t have been more impressed. He dove straight in with an examination, choosing not to read other opinions before getting his own history. He is from the old school, using a little hammer to check Kevin’s reflexes. He commented that Kevin must have made much progress to get to this point. In taking a pin and pricking up each side of his chest, he noted that the response wasn’t consistent. He got stronger as he moved up Kevin’s chest. He hypothesized that Kevin may have had some spinal cord damage around the area of the neck fractures. Obviously, it isn’t a complete tear in the spinal cord, since Kevin feels and responds to all kinds of various stimuli throughout his body, but it might explain some things and give Kevin another hurdle to jump over. He scheduled an MRI of his head and neck, as well as an EEG to measure brain waves. He told us to continue playing his favorite music, talking to him and speaking positive of his recovery to him. Then he really blew us away. He pulled out a Bible from the shelf and found a scripture to encourage us.

“ 4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:4-7.

He then left us with this thought. He said, “…and remember Abraham was thankful to God for what he didn’t yet have.” He didn’t want us to lose heart. When he spoke, he spoke to Kevin. He looked at him and us, as if there was hope and listened to what we have seen and experienced. We are so grateful for Kevin’s doctors and therapists. They are truly a team put together by God for such a time as this.

Kevin has continued producing sounds upon request while wearing the one way valve. He has tolerated the valve on his trach well and building on his responses and consistency. He has produced other sounds too, such as “H” sounds and various groans and moans as he continues to adjust how to use his vocal cords once more. Kevin’s speech therapist showed us how to put a finger to Kevin’s throat to see if he is trying to produce certain sounds, even if we can’t hear anything. Try holding your finger to your neck and breathe, then try it while speaking….see the difference? Last week, Angie and our nurse that day, heard Kevin try to say “hi” three times. He would cough in and around the words until the third time, when he let out a more normally pitched, “hi” then proceeded to cough as it isn’t easy to make these sounds after so long. They came and woke me up, but he had already used all his energy. When asked to make his sounds louder, he does, which shows comprehension. He tries really hard and then has to take a break.

Last week, during one of my night shifts with Kevin, he was slowly turning both his hands by moving them back and forth. He also seemed really alert at 1:45 AM (not abnormal for Kevin before or after). Not sure what prompted me to ask now, but I asked him to give me a thumbs up. You see, some people can discount squeezing a hand, for twitches, even if he wasn’t doing it prior to asking, and doesn’t do it afterwards. But a thumbs up, that means there is comprehension and response. I watched for about five minutes as he pulled his four fingers in to form the foundation of a thumbs up. His thumb lay flat against his hand. As I continued to ask, I saw his thumb muscles twitch. He slightly and slowly moved his thumb. He would try to raise it, but it seemed glued to his hand. Then I saw the amazing quick lift up about an inch towards giving me a thumbs up. His thumb immediately went back down, but I was so excited. I kept asking and asking, kept pushing and encouraging as if I was spotting him while lifting a challenging weight of barbells. I kept seeing his thumb twitch, but only after I asked for it each time. Two more times he raised his thumb up about an inch. At that point I went to wake up Angie. It was the first time, I have ever woke her up at night since bring Kevin home almost five months ago. She came out and saw Kevin responding to my voice and challenge to move his thumb. He didn’t get his thumb any higher that night, but he had most definitely reached a new plateau in recovery.

Over the next few days, I repeated the challenge with other family members around like his kids. He would slightly move his thumb, trying hard to get rid of the invisible rubber band holding his digit down. Then on Monday, when we returned to therapy, I shared what had been happening. Kevin seemed very sleepy during therapy, so they spent much energy waking him up, just in time for the speech therapist to come in. Today, we returned to therapy and I dropped off Kevin, Angie and our nurse. I am trying to fulfill my new role with Team Expansion and set aside hours to make that succeed. I have been working on average 40 hours per week since starting in this new role. So today, I went off to a Borders bookstore with free wifi and I proceeded to work, returning about thirty minutes before Kevin’s therapy was over. The speech therapist, who had seen Kevin first today, bumped into me as I was coming and told me how she had come back up to Kevin during his other therapy and asked Kevin to give her a really loud sound and she would leave him alone today. She said about a second later he let a big “AHHHHH”. So she said okay and let him be.

I thought that quick accurate response was going to be the big news of the day. I was wrong. I went in to Angie and the therapists excitedly recounting what Kevin had done. He gave them six thumbs up!!! I was amazed. I asked if it was the half lifts, like I had seen and been practicing with him, and they told me know. They said they were full on thumbs up! They said when they would ask for it, he would raise his thumb up and it quiver as he held it for a moment. Then he would let it back down. It was like doing reps at the gym. Awesome progress!

We got Kevin an ipod touch for use in therapy. They use it to push him further. They turn on one of his favorite songs then pause it saying they’ll turn it back on if he does whatever they ask him to do (squeeze a hand, make a sound, turn his hand, you get the idea). We have put a couple audio books on it from Yesterday, when Kevin I were here alone, I put a sermon from North Coast Church on for him to listen to and then put ESPN radio on for him to catch up with sports. We have found several apps (programs) to use with him for stimulation and training. We also bought an app which plays about fifty different ambient environments that we can use when he has trouble sleeping (rain, ocean waves, white noise, etc…) or for stimulation (cars, street life, airplanes, etc…). This week I will be putting some voice messages on it that he left us while we were in Italy. Vonage sends voicemails to email and I saved every one of them. This is a way that he can hear his own voice during therapy.

If you’ve read this far, I congratulate you and thank you for your love for Kevin, so much that you read my boring dribble to hear news of his recovery. Before closing, I wanted to mention a couple ways for people to help. If you want to buy iTunes gift cards for Kevin, we can use them to buy more stimulating apps, his favorite music and audiobooks. Any denomination is appreciated. Also, we are wanting to put up a privacy fence in Kevin’s back yard. It only needs one side, two neighbors already have them. It would enable a little more intimacy when taking Kevin outside. It would also allow us to create an outdoor shower, which has been done by others and suggested by a medical professional. Right now, Kevin gets bed baths every day, this would give him a new sensation on warm sunny days.

Thanks for caring. Thanks for reading. And thanks for praying.
Matt, Angie and family
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