Pray for Kevin #96

Have you ever ridden on a train? In Italy, we have had the opportunity to ride on many trains. One specific train from Ancona to Rome is particularly memorable. During the last twenty minutes or so there are about thirteen tunnels. In Italy, they often keep the windows cracked open on second class cars on trains (we usually rode second class to save money). It could be stifling hot outside and the windows will only be cracked open. So, when you pass through a tunnel there is a vacuum and your eardrums turn inside out. You don’t know how long it is going to last and you can’t see the end of it because your window looks to the side, not the front. I finally learned the number of tunnels on that last twenty minutes, but previous to that, it was excruciating waiting through tunnel after tunnel. Dark then light, hot air outside the cool air in the tunnel, ears popping then trying to unpop your eyes….. We feel like we are speeding down the track on a train with an unknown destination. Each time there is a mini event, it’s like we are going into another tunnel. How long will it last? Will my ears quit popping?


This week, I feel like we are going in a thousand directions. People start calling in the mornings and then throughout the day. Each one thinks their interest is the most important. We’re trying to balance out all these things for Kevin’s best interest.

The house is moving along. Crews have been there day and night the past several days. People are there tonight staining and painting and prepping Kevin’s house for his arrival. The cabinets are all installed. When I was there this afternoon they just needed some trim. The dishwasher was installed, and the stove and fridge were still waiting to be moved into place. The ventahood/microwave has to wait to be installed until the cabinets are stained. That process has been started tonight. The stain has to sit for 24 hours and then a second coat is applied. The furniture and belongings that were in Kevin’s house at the time of the flood are being divvied up into what comes back to the house and what goes into storage for now. We have called several area storage companies and visited a couple today.

They continue preparing us and Kevin for discharge. Today they ceased several medications and decreased one. The medicine that has been finished are the muscle relaxer (bacloflen), Claritin (for allergies so we aren’t sure why they stopped it, Kevin has allergies), and vigamox (eyedrop antibiotic that was really only a preventative, the ointment is what is really helping). The provigil (for alertness and to treat sleepiness) was cut in half. Maybe without the muscle relaxer, he won’t need as much provigil anyway. They also just removed Kevin’s PICC line about ten minutes ago. They haven’t been using it lately but were keeping for an emergency. They are going to do two blood cultures, fifteen minutes apart (from the PICC line before they removed it, or the site of if they couldn’t draw off of it and also on Kevin’s left side).

Our family continues to be trained. I removed Kevin’s trach tube (supervised of course) and replaced it with one that it is cuffed. A “cuffed” trach means that there is a little balloon on the end of it that, when inflated, keeps anything from going back down into his lungs (food or secretions). He had a cuffed trach originally, but then changed it out a few weeks ago. Everyone is getting down the basics, cleaning, suctioning, trach care, peri care, feeding through the tube, giving medicine, turning, etc…… It is getting more comfortable. If only some of the training were better organized…..

Pray that everything that needs to get done, gets done. Pray that Kevin’s house is finished well. Pray for God to bring to mind everything that we need to know and prepare before bringing him home. Pray for the doctors here, so that they will not release him until everything is completely set up. Pray for the other doctors that we need for Kevin’s health care team to be found.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #95 on Kevin

How scary is this…….trying to go to sleep while Kevin is ‘plugged’ into practically nothing. No pulsox (measuring O2 and Heartrate), no telemetry (monitoring from someone in a room here at Meadowbrook), no IV’s (carrying healing antibiotic juices), etc…. Kevin has one tube that is connected to his trach. That tube is delivering a heated and humidified equivalent of room air through his trach into his lungs. Kevin is practically ‘unplugged’ from everything….and is doing well. Every couple hours they check his vitals. Every hour he continues to have ointment (that we, the family, are learning to put in).


I remember when we first got to Meadowbrook, and they took Kevin off the ventilator (the second day here). That first night that I stayed with him without the ventilator, I tossed and turned, never knowing how long Kevin would keep breathing without the help. The isn’t Kevin’s first night without the ‘other connections’, but it is my first night to stay with him like this (he’s been unplugged for a few nights now). I anticipate some tossing and turning, although the difference now is that he hasn’t been plugged into anything that has been keeping him going, rather monitoring and delivering medicine that he no longer needs.

The past week, we have seen several visitors that haven’t seen Kevin for a month or so. Their impressions have been encouraging. They have seen the major leaps of progress by skipping the minor steps in between. Although, deceptively Kevin’s recovery looks faster to them than it does to us, it is encouraging to see the overarching milestones stretching above the daily minutiae.

We don’t know when we are taking Kevin home yet. The plans are still forming and swirling. The absence of knowledge makes us lean more on God. We are leaning out across the edge of the unknown. Will we go right or left, up or down. We are not to know the answer to that today. And we must remain content until tomorrow brings the answers to those questions.

We have a seating specialist that is supposed to come and evaluate Kevin. This is to determine what kind of specialized wheelchair that would benefit him. Apparently, a neuro chair is not a normal ‘home’ health instrument. Of course, this is somewhat scary for the family since it is during the times that Kevin is in his neuro chair that he is most alert. Will he get that same stimulation in a specialized wheelchair? Hmmmm, not sure. I suppose we can see how this goes. The problem with a wheelchair is that it can’t be lowered like a neuro chair to lie next to a bed. The easiest form of transfer is with an inflatable air mattress that slides over onto the neuro chair and then is deflated. To get Kevin into a wheel chair we will have to use a Hoyer lift. This is like a miniature crane that picks Kevin up in a net hammock. There are issues with the safety of a hoyer lift, but because it is the standard, we are forced into using it. For instance, one of Kevin’s sores had basically just finished healing (although the scar would take longer to heal), when most likely due to the net not being taut, his sore was ripped back open. It was bleeding Sunday. It hasn’t really bled since early in his stay at Meadowbrook. It is already looking better again, but the risks are still present.

We have a pulmonologist for Kevin’s health care team. This is the same pulmonologist that our family has appreciated very much at Meadowbrook and has gone out of her way to champion wishes of the family in Kevin’s best interests. Now we just need the other professionals to round out the team.

The work crew showed up at Kevin’s house today (Monday) at 4 pm. They got the upper cabinets taken out and many other projects started. They will be working on the house over the next few days, taking care of all the tasks to help the family move Kevin into a safe environment. I’m sure they could use help with the various projects if anyone wants to help. For more details, email me at mcrosser@teamexpansion.org or call me at 918-850-9828.

Thanks so much for praying and reading over these updates. I’m headed to sleep since tomorrow seems to be as big of a day as was today. We are thankful to God that He continues to get us through this day by day. It is because of Him that we have been able to make it as far as we have.

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

Update #94 on Kevin

This weekend has been a flurry of activity. It does not feel like we have stopped yet. We are trying to get trained at Meadowbrook. We are trying to get the kitchen at Kevin’s house done, as well as minor improvements while we are working on it. We are going to be working on separating what of Kevin’s home effects will go back to the house and what will need to be moved into a storage unit for the time being. Appliances were ordered on Saturday. Kitchen cabinets were picked out and invoiced on Sunday. Appliances will be delivered and picked up on Monday and Wednesday. Cabinets will be bought and picked up tomorrow. We will have someone go to our (Matt & Angie’s) storage, where we have a few pieces of furniture that will take over to Kevin’s for the time being. The old upper cabinets will be taken out tomorrow. The new ones will need to be stained in the next couple days. We need to get curtains or blinds for each window, for privacy. A work crew from Highland Park Christian Church is starting at the house tomorrow at 4 pm, there should also be some family working too.


During all this, we will continue to be trained in caring for Kevin. This includes giving him feedings, turning him, positioning him, moving him into a neuro chair and/ or a specialized wheelchair, cleaning him, applying ointment, giving him medication, etc….. We are calling about insurance for his house and insurance for his person. We are searching for a home health care team. That is physiatrists, general doctors, pulmonologists, neurologists, physical therapists, occupational therapists and speech therapists. We are searching for a home health care agency, one that is the best one for Kevin. We are searching for a medical equipment supply group, that can supply everything that Kevin needs.

Pray for our family as we muddle through all of this. I know I have left things out. Today has been a blur. Yesterday was one too. We know that God will lead us through this. He has led us through so much. God is faithful, he will not let us be tempted more than we can handle.

Last week, we knew so little. How long would we stay at Meadowbrook? What facility/place would be next? When would Kevin’s house be finished? Where would we spend the holidays? Only one week later, we have many more answers. By next Sunday, we will know even more.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #93 on Kevin

You prayed and we have our answer. This morning we received the news that St. Francis’ sub-acute rehab was denying our request. They ended up not sending out someone to do an evaluation choosing only to look over Kevin’s paperwork and charts. Our plan B was Home Health Care, with the goal of improvement in alertness and following vocal commands in order to eventually be accepted at a sub-acute rehab.


We have been working with a nurse advocate who has been very helpful. Kevin’s insurance is giving us 3-5 days to be set up for Home Health Care. That is going to be a monumental task, but one for which we are ready. As Kevin’s brain heals and he progresses we can have one of the sub-acute rehab centers re-evaluate him for their program. The nurse advocate has been helping us take care of many details, such as getting Kevin his own neuro chair….not sure if it would be blue or not. With that we can wheel Kevin into the kitchen when we are cooking or outside for a different atmosphere.

During the next several days, we will be tasked with prepping the house, getting furniture back into the house that has been in storage, and above all getting trained by the staff here for discharge. We have been learning how to suction Kevin and things like range of motion (physical therapy), but next we get to learn things such as changing out his trach and wound care. They are going to try to remove his catheter, which will be less chance for infection. And they are going to remove his PICC line, because he is finishing up his antibiotics in a couple days.

There are still many phone calls and decisions to be made, but we just wanted to keep you updated to pray. Would you pray that Kevin would get a neuro chair, as well as the inflatable air transfer mattress? Would you also pray for an air movement bed (not sure the exact name), but they have a constant flow of air inside the ‘mattress’ which keeps Kevin’s body moving to prevent bed sores.

Kevin’s right eye has continued to look better and he is still have good reflex reactions in his left eye. Please continue to pray for his eye. Also, pray for the outpatient health care staff that we are assembling (internal medicine doctor, pulmonologist, neurologist and eye specialist). Please pray for the house to be finished in time (kitchen is still being designed and ordered, then will need to be installed). We also have to purchase new appliances for kitchen (insurance isn’t paying for those either). Pray for all the pieces to be in place in God’s time.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #92 on Kevin

Insurance is allowing us time for an assessment from the sub-acute rehab center before forcing our hand. This assessment is supposed to be done by tonight. Please pray for this evaluation. Pray that God heals Kevin and puts him in the place that He wants him placed. Pray that God gives us the attitude to accept His will. Pray for the evaluator to see what needs to be seen. We’ll update you as we learn what is happening.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #91 on Kevin

So, here we are…..still here. Our conversations went well so far today and are getting to wait until Friday when we are supposed to hear from the sub-acute rehab center. They are supposed to come out and do an assessment, hopefully today. If they approve him, we may just get to stay here until a bed is available. If they deny him at this current time, we will most likely head to a skilled nursing center, since the house is not quite ready yet, otherwise we would probably focus on Home Health Care next.


I have been on the phone or meeting with people since early this morning. Last night Kevin awoke me from sleeping three times by coughing. In the dark I stumbled out of bed, went over to assess the situation and then suctioned him. I think he was a little tired this morning, maybe me too.

So, while we await assessments, paperwork and approval….we are still here.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #90 We Shall Overcome

In whom do we trust? To whom do we bow down? When tomorrow comes, we will put our faith in the one who has continually provided for us. That is, the one who has given us our very life. Am I scared about conversations that need to take place tomorrow? Sure. Do I know what the outcome is? No. Does God know everything there is to know about me, Kevin and everyone else involved in this spider web? Yes. And that includes the doctors, the case managers, the insurance workers, etc…


We called for someone from our church to come over and chat us through the situation. Like David’s unbelievable victory over Goliath, we will trust in God to carry us through today, tomorrow and each day after. He has never failed us. He has puzzled us at times. We have wondered at his plan in other times. But he has never failed us. Not once. Not ever. He will not fail us tomorrow and he will not fail us the day after that. God is the same yesterday, today and forever.

As early Christians in New Testament times were stopped by closed doors, we will proceed forward on the path that feels like is right for tomorrow. We will trust that God will guide us and close doors where necessary. We also appreciate so many of you that are praying for Kevin and our family during this time. Will you pray for the conversations that need to take place tomorrow? Will you pray for the doctors and staff to place Kevin in the facility that is best for Kevin’s recovery? Will you pray that God is glorified through what happens tomorrow?

Thanks for reading. Thanks for praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

Update #88 on Kevin

This afternoon, we noticed that Kevin seemed to be resting very soundly. Last week, Kevin’s heart rate staying getting into the 80’s more often and even hit 80 once. Myself, I saw it hit 81 and I hoped to see the elusive 79 (or even 80 bpm since I did not see that but someone else did). Today, we saw it hit 80, then 79. It kept dropping to 79, so we kept count….for an hour. Kevin’s heart rate hit 79 over 40 times, sometimes for only a second or two, but other times for almost a minute. It also hit 78 a few times, 77 a couple and even 76 once!! Very good restful heart rates, especially for a brain injured patient.


In the last week or so, there are times when it looks like Kevin might be trying to smile. Kevin doesn’t move the right side of his face near as often as he does the left. That makes a smile harder to see, since it is one-sided. It could be a grimace or reflex, but maybe a smile.

I dreamed of Kevin awake again last night. He and I were going to a meeting after he got better. It was nice.

Kevin’s secretions have gotten much better today. He even kept the one-way valve on for much of the day. At one point he did try to cough real hard, and he was making a throat clearing sound as he did it. The one-way valve, also known as the speaking valve, allows sounds to come through his trachea.

Now, go and get some rest (I’m talking to me too). Get some sleep and dream dreams.

Thanks for reading and praying,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/

Update #87 on Kevin

It’s amazing what gets thrown out the window when life becomes anything but normal. How often do we show affection or speak in affectionate terms to those we love? What matters and what does not really matter? Lately, in intimate times with Kevin or when talking about him, I have referred to him lovingly as ‘my bubba’. I’m not sure if I ever called him that when I was a kid, but it seems to fit just now. I call him, Kev or Kevy too. Who is in your life that you care about? Today, we were watching “Everybody Loves Raymond” with Kevin and the episode came on where they were dealing with the usage or absence of telling one another “I Love You”. Ray told Debra that he shows her, instead of saying it. While we should show each other, it’s good to speak affectionately too. Don’t wait write someone you care about today. Call them on the phone. Send them a Facebook message.


Kevin is laying in bed after having an eventful morning. His heart rate is 90-94 bpm. Angie is sitting beside me making some Autumn decorations to bring color to the room. Kevin has been alert since they first put him in his neuro chair. About an hour into sitting in his neurochair, the therapy department came in to put Kevin back on the tilt table. Respiratory came in and put the one way valve on his trach (to make him ‘tube’ free during the tilt table therapy). Measuring his heart rate, O2 level and blood pressure they raised him up several degrees at a time. His blood pressure was lower than normal when they started (around 95 over 67), but they weren’t worried as long as it didn’t drop. They brought Kevin up to sixty degrees again today. Up for about 20 minutes Kevin held his own. They would continue to check his blood pressure and it didn’t change or drop. His O2 level was better today than Friday, never dropping below 94 percent, it stayed mainly in the upper 90’s. In other words great! His heart rate stayed in the 90s and low 100s during this activity. Kevin’s eyes remained open and moving during all this too.

Kevin has been moving his eyes together more regularly too. Also yesterday and today, I have been noticing Kevin looking to his left. Usually, his glance switches between his right and straight ahead. It also seems that when he is not focusing his left eye it rests ‘looking’ to the right (his right eye has moved around independently of his left for several weeks). When he was put back into his chair, from the tilt table, we turned on the TV onto TV Land. Another family favorite, The Beverly Hillbillies, came on with its unique theme song. Kevin had been looking straight ahead for awhile and I wondered if he would respond to the show coming on. After a few bars of “This is a story….” both eyes looked to the left in the direction of the TV and sound. Good stuff. Thanks God.

In the time it has taken me to write this update, Kevin seems to be resting soundly in bed. His heart rate lowered to a restful 85 bpm, his eyes are half closed and he is breathing through his mouth and nose (with the one way valve still on him). All his life, Kevin has slept with his eyes partially open, it has always been creepy and somewhat unnerving, but today it is nice. It’s a touch of normal. It is comforting to look over and see him blowing air out through his lips in a kind of snoring manner.

Let me challenge you to hug someone you love today. Tell them how much you care. And don’t let embarrassment or pride get in the way of using affectionate terms.

Thanks for praying. Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/
http://prayforkevin.blogspot.com/

Update #86 on Kevin

Sitting at lunch, driving in the car, living our lives….our family seems to constantly remember the little things that Kevin would do or say. Others have told us about dreams they have had. I had another extremely vivid dream a couple nights ago. In the dream, Kevin had apparently ‘awakened’ and took place a few days after and was telling everyone about his experience from his viewpoint. That is, what he had heard, what he had seen, etc… Man, it was so real. Unfortunately, that is not our reality yet, but we pray that it is soon.


Kevin’s heart rate got up pretty high today. Apparently, he was in his blue neuro chair for over three hours (three hours and twenty minutes). Towards the end of his time in the chair, his heart rate got into the 130’s, then while having his trach changed out his heart rate got up to 147 and stayed in the 140’s. By the time, I got up there several hours later, he finally crossed the threshold of 100 to 99. Pray that he can continue to have lower, healthy heart rates, as his body and mind heals.

He also had a temp of 101.8 earlier today, but was 99.5 when I was there. He had a bath today, but it didn’t look like he had been shaved…..hard to tell anyway.

Pray for Kevin’s mind to continue to heal. Pray for his body to continue to heal. Pray for our family to lean on God as we struggle through this. Thanks for praying.

Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/
http://prayforkevin.blogspot.com/

Update #85 on Kevin

This week we have seen Kevin having an even better heartrate than normal. This week in times of rest, Kevin’s heart rate has been down in the low 80’s. Even hitting 80 one night this week.


Thursday, Kevin got another shower. That makes our family very happy since it provides a different stimulation to Kevin (water, gurney, different room, etc…), and it also helps him be cleaner than a sponge bath.

After reading about them in the Brain Injury Association of America resources, we asked if Occupational and Physical therapy had a Tilt Table. We didn’t even know what it is really, but we know it is something that helps a patient “stand” in a more upright position. We have read that for traumatically brain injured patients the most neurologically stimulating position is standing. This morning around eleven o’clock therapy put Kevin onto the tilt table. It looks like a general doctors office “bed” that you sit on for the doctor to examine you. Same vinyl covering, same size. The difference is that it tilts up electronically. After strapping Kevin in with several belts, they starting lifting Kevin up a few degrees at a time. They would stop and monitor his heart rate, blood pressure and O2 levels. They kept taking Kevin all the way up to 60 degrees. That is actually really impressive for someone who has not been in a standing position for over two months. The therapy department was really impressed with how well Kevin did. They said usually a patient will pass out or their blood pressure will drop suddenly. Kevin didn’t do any of that. He’s a fighter. They said Kevin did great and they will do it again on Monday.

Kevin’s right eye continues to look better each day. With some staff we have to make sure that the ointment is really getting in his eye each hour. Pretty sure today, it didn’t get in there for over three hours this morning. We will keep vigilant about that ointment, since if his eye doesn’t continue getting better the eye doctor has said he would have to tack (sew) his eyelid shut.

Insurance has cleared Kevin until Monday at Meadowbrook. We still have not heard back from the Rehab at St Francis nor the Skilled Nursing Center assessing Kevin. The insurance continues to hound us through the case manager at Meadowbrook about what other places have we visited. We scoured the industry guide, called the Vintage Guide, calling each facility. Then those who would even consider taking someone with a trach we visited. How can we visit more places, if we have been to them all in this area?

Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/
http://prayforkevin.blogspot.com/

Update #84 on Kevin

A family member wrote yesterday about something that I was planning on mentioning in an upcoming update….that is Kevin’s love of claw machines! You know those machines that look like popcorn machines, with a claw that reaches down and grabs stuffed animals, toys and even jewelry? "The Claw! The Claw is our master. It decides who will go and who will stay." (The little aliens from Toy Story say this when Buzz and Woody meet them at Pizza Planet). A few days ago, Angie, Kohl, Jacob and I were at Wal-Mart. We were leaving and saw the arcade on the way out. We decided to stop and toss in a few quarters. We ended up at the claw machines. I won a necklace for Angie and Jacob won something as well. The allure for me was that Kevin does love those claw machines. The family member that wrote talked about Kevin sitting there dropping twenty bucks to win a stuffed animal for one of his kids or someone else’s.


I saw Kevin’s back sores last night….wow! What a difference a few days makes. It is looking better and healing up. They started putting an antibiotic ointment on it last week and that has seemed to do really well. Kevin’s right eye is also looking better. It still is red in different areas, but the right side of his eye is looking better each day.

Kevin’s doctor came in today and said that Kevin’s blood work came back okay. Which means the MRSA staff infection is not in his blood. This means that the MRSA staff infection is most likely colonized in his back sores.

Kevin has had quite a few secretions the past couple days. Not sure if it is due to allergies or what. It seems many people we know are dealing with allergies, headaches due to allergies, etc…. So maybe Kevin’s are a result of that too.

We got another $1100 this morning towards the kitchen project at Kevin’s house, which means we reached beyond our goal, so we can start ordering the kitchen pieces then it can be installed. Depending on how long it takes to order and get pieces in, the install should only take a couple days. We may have a work day for those wanting to help install it.

Things are progressing, albeit slowly. I was reminded today of this, when a couple of Kevin’s visitors stopped by. They hadn’t been by in about a month. They remarked about the jump in progress since they had seen him. I likened it to watching a snail move. If you sit and watch the snail crawl across the room, it seems like forever…..but if you leave the room and come back later, you see how far the snail has actually come. Well, we’ll celebrate all the progress, whether it comes slowly or quickly. And we will continue to thank God for the progress that has been made.

Thanks for reading,
Matt, Angie and family
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Update #83 on Kevin

Sometimes it feels like this whole process is going to take forever. Kevin shouldn’t be laid up in bed in a coma, vegetative state or minimally conscious (depending on whom you talk with). It shouldn’t be like this. All of our lives are ripped up out of the stable ground and cast into the swirling wind. For instance, how do I answer the question, how am I doing? How am I doing? I know for many it is just another way to say “hello”, but some ask expecting an answer. Some ask it with a tilt of the head and quiet understanding which suggests ‘I’m here for you.’ Others ask it as if nothing else is going on. So, how am I doing? Any answer I could give you, on better days to lesser days would be tainted with one fact…..at this moment, Kevin is not now what he once was. That does not mean he will never be again. In fact, as a follower of God, I believe he will be better than he ever was….one day in eternity. But right now, when we go to lunch as a family after church, go to a movie, hang out, etc….and he’s not there, a piece of us is missing. So, if I hesitate in response to that question…..it is only a processing of the current state of our lives and how to state something like “good, but my brother is still not completely awake or the same.” Or “decent, but I haven’t been able to hear my brother tell me one of his stories for over two months”.


This weekend there were a few bumps. The nurses started having trouble getting Kevin’s IV into his veins. Apparently it took at least three different nurses trying to get one in on Saturday and then his IV got pulled out when they moved Kevin into his blue neuro chair on Sunday morning. So, when they went to get it back in, there was a couple more tries.

Also, the infection specialist doctor came in on Sunday morning, saw Kevin had a fever (around 101), heard about the IV’s wanted to know about his PICC line (a line from his arm that goes into his heart and empties out). The nurse told him that he had requested the other one be pulled when Kevin was having fevers before. He wanted everything to be checked for infection (catheters, PICC line, etc…). I guess no one knew to order a replacement PICC. So they replaced a PICC line yesterday evening.

A PICC line was already scheduled for today anyway by Kevin’s general doctor. They have started Kevin on another couple antibiotics, Cipro (ciprofloxacin)and Vancomyacin. He had been on Cipro before. Vancomyacin is a hard hitting antibiotic which is usually only used for serious infections which other medicines may not work (mayo clinic). These are on top of the antibiotic ointment that Kevin is getting for his right eye (which was continuing to look better today). Vancomyacin is so caustic that they have to insert it very slowing to prevent thrombophlibitis (swelling or redness)

It is interesting to note sometimes the politics that play out in a hospital or medical institution. That is, who doesn’t like who, or who disagrees with who. Sometimes, it is interesting to see a whole group (ie nurses, doctors or techs) that disagree with another whole group. They need to all sit down, realize they are on the same team and read the book, “Silos, Politics and Turf Wars” by Patrick Lencioni. Great read, especially for leaders.

A note about Kevin’s kitchen….I hope that as you read these updates you feel no strange impulses of guilt, or a desire on my part to impart those feelings. What I know is that this is how the church can be the church. To not know about a need is the ability to do nothing for that need. It’s really that simple. If you can help…then help. If you can’t or God isn’t leading you to do so…..then don’t. If you have a need, let those around you know about that need and trust God to meet that need. For us it seems to be as difficult to trust sometimes as it is to believe that there is no way God won’t take care of those who love and follow Him. That said, another $100 came in this weekend towards the kitchen project. That means we now have $1300 out of $2300. If only ten people gave $100 we would be purchasing and installing the kitchen in the house this week. Or twenty people to give $50. Really what it comes down to is…if you want to help (and many people have asked for ways to help) this is another way you can help.

I have been checking on the Pray for Kevin bracelets. When we placed the order towards the end of September, it was supposed to take a few weeks. We still have not heard anything from those who were ordering the bracelets, so we will continue to check on those and get them in. Thanks for those who have asked. And definitely thanks for continuing to pray for Kevin with or without those bracelets.

Kevin’s main doctor came in today and saw Kevin alert and up in his blue neuro chair. He told the nurse that this was the most alert that he had seen Kevin. He asked the nurse if Kevin has been like this before, she replied that he has had many alert/awake times like this in the past, especially since getting started on Provigil.

Not sure, who all has been checking the dilation in Kevin’s eyes, but I asked a night nurse recently and she said she hasn’t seen any dilation. I will be checking it myself in a little while. Thanks for all your prayers and encouragement.

Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/
http://prayforkevin.blogspot.com/

Update #82 on Kevin

So Kevin had his rescheduled eye appointment today. The doctor thought that his eye is looking better. He isn’t going to change anything right now, and doesn’t see the need to sew (tack) his eyelid shut just yet. He is going to see him in four weeks. He was very encouraged because Kevin is moving his right eye and blinking more than it was (even if it is slow).


The doctor last week ordered cultures of the sores on Kevin. The results came back and Kevin’s sores have the MRSA bacteria. MRSA is a strain of staph bacteria that’s resistant to the broad spectrum antibiotics commonly used to treat it (Mayo Clinic). Staph bacteria are normally found on the skin or in the nose of about one-third of the population. If you have staph on your skin or in your nose but aren’t sick, you are said to be “colonized” but not infected. However, you can still pass the germ to others. That means gowns and gloves for visitors once more!

After putting in one of our recent updates about Kevin’s home heater, several people responded. Kevin’s heater is now fixed. Thanks so much to the guys who offered and especially those who fixed it. It really means a great deal to our family. At some point, we’ll need someone to look at his AC too, but hopefully, the weather will push that need back a little.

Since the update about Kevin’s kitchen, another $100 was contributed towards the project. That means we have about $1200 towards the need of $2300. The vinyl flooring was installed this week, and with the heater fixed, it is getting really close to structurally finished. Once we raise the money for the kitchen, it can be installed and stained in a relatively short time. After what has been contributed so far, we still need another $1100 to order the pieces. Next steps will be continuing to look at Kevin’s furniture to determine what is salvageable, what will go directly back into the house, and what might go into storage for the meantime.

Thanks to those who have mown lawns throughout this ordeal. It has been a great way to help our family. We really appreciate it.

Thanks for reading and praying,
Matt, Angie and family
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Update #81 on Kevin: Pupil Reaction

So quick good news…..something that we have been waiting on since Kevin was in the Trauma ICU. Kevin’s left eye had pupilary reaction. Tonight, Kevin’s nurse checked Kevin’s eyes with a light, while doing some regular tasks. She didn’t say anything, but went and asked the charge nurse to come back in with her. The charge nurse checked his eyes too and they had a quick whispered conversation, of which Angie heard one of them say, “it did, didn’t it?” Basically, Kevin’s left eye had a definite response to light. Later in the evening, three family members also tried it again. The dilation responses continued. Kevin’s right eye is still healing, so I don’t expect much from it. But it is really exciting to see any quick movement in either eye. Usually, pupil reaction is looked for in an effort to assess consciousness. I’m not sure what this means in relation to Kevin’s situation being two months out from the accident, but we will celebrate it for the new progress that it is.


Thanks for praying and reading,
Matt, Angie and family
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Update #80 on Kevin

Low carbs….. My brother, Kevin, is a big believer in low carbs. So many times, I saw him eat a burger without the bun. Or go to a buffet and have all you can eat steak, proclaiming that it was okay to have that fourth steak…since he wasn’t having any bread or rolls. Kevin has taken care of himself; athletic, good looks, but it’s his personality that people usually fall for. It’s more than just being outgoing. It’s being friendly, nice, helpful. In my opinion, it’s being like Jesus. Is that to say that Kevin lived a perfect life? No, but neither did David, Abraham, Jonah or Paul. And neither have any of us. For those of us who are believers, we strive to do the right thing. That doesn’t mean we do it every single time. What it means is that if we weren’t striving to do the right thing, we would do it right even less than we do now.

Kevin’s eye appointment got cancelled today. His eye doctor got stranded out of state. His eye appointment has been rescheduled for Friday morning.

Since he didn’t go anywhere (on an eye doctor field trip), we requested that Kevin get another one of those old fashioned real showers! You know the kind….water pours out of a shower head on the wall and washes away all the soap and grime. They use a PVC pipe bed for the showers. Again, Kevin had a speaking valve placed instead of hooked up to wall-flo air. He coughed a couple times, but not much they said. He came out smelling good and looking good with a freshly shaved face. Something hit me, the other day when we were going through Kevin’s house stuff. We have to open up boxes and go through everything from his house. We look for flood damaged items. I opened one box and I thought that smells like Kevin. It was sour. I am not a big fan of the sponge bath….maybe it depends on who does it, but often he is not fully cleaned with one. So, I am happy with the real shower.

We continue to learn how to be advocates for Kevin. We don’t want to come across as jerks to anyone, but we don’t want his care to suffer in any way. Overall, the staff at Meadowbrook is great. We have formed several friendships being there and seeing their care for Kevin and our family. We are thankful for where God has us right now. It is hard to look at the future, much less the next step, it seems to be shrouded in a gray fog (or is it grey?). We just forge ahead, looking at the bits of the puzzle that God lays down in front of us. Is it hard? You bet. Is it what we really want to be doing? No way. But we will follow God, in the good and the bad.

Kevin’s house is still being finished. The kitchen floor could not be installed since the heater does not work. The glue would not stick if they tried to place the vinyl flooring now. It has to be more than 65 degrees for the floor to stick. The solution is to get an electric heater that will keep it a tropical 65 degrees for 24 hours in order for the floor to adhere. The flooring should be done by Thursday. Long term, we need the heater fixed (and the AC too). Please let me know if you know how to fix a heater.

The kitchen cabinets need to be ordered and then they can be installed. We have a small team for that. It should take a couple days once we have the modules bought. We have about $1100 towards a total need of about $2300. If you can contribute towards that, pleeeease let me know ASAP (Matt 850-9828).

Kevin was in the neuro chair earlier and was awake throughout. Remember, when I state “awake” I do not mean fully out of his state. In the early levels of consciousness you will begin to have awake and sleep cycles. The provigil Kevin has been on, seems to be having good effects. Also, we have been reading much of the material from the Brain Injury Association of America. There are all different things we can try, which we plan as we move forward.

Now, I think I’ll go get a burger without a bun, in honor of Kevin…..nah, I’ll still eat the bun.

Thanks for reading,
Matt, Angie and family
_______________________________
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Update #79 on Kevin

When is a good dream a bad dream? Many in our family have been dreaming dreams. Since Kevin’s accident, we have all had dreams about Kevin, good and bad. It does however go in waves. The dreams in the current wave have been good. However, that can be the problem….when you wake up from a good dream and realize that it hasn’t happened yet, the balloon of good feeling is punctured.


I look back over the past couple months and see all the progress that Kevin has made, that brings us happiness. Getting stuck in the snail-like day to day slowness can take its toll on you. This weekend has also been a rollercoaster of emotions. We were basically told on Friday that if our family didn’t make a decision on a skilled nursing facility this week, insurance would force the staff at Meadowbrook to make it for us.

Friday, they also switched Kevin’s food from a continual feeding drip to four times per day getting a can of formula food. He gets two in the morning and one can every six hours after that. This shouldn’t change much in Kevin’s nutrition, but might make it easier for a skilled nursing center to approve him.

We still have not heard back from two centers that were assessing Kevin’s situation to determine their acceptance. Over the weekend, one of the doctors really stepped out and helped the family by ordering some medicine called Provigil. It is for the treatment of narcolepsy, shift work sleep disorder, and excessive daytime sleepiness associated with obstructive sleep apnea. There should be no problems with him taking it, but it might help make Kevin more alert. Today they actually started doubling it. Kevin’s left eye (right eye is taped, not patched) has been open and moving around a lot today. His right eye (that has had all the issues) is continuing to look lighter in color. The white of Kevin’s eye is much less red. The side of his eye has gotten much better, looking only like a bloodshot eye, rather than completely red.

Also, this doctor has been contacting the medical director for Kevin’s insurance in order to get more time here at Meadowbrook. We think they will be allowing Kevin to stay for ten to fourteen more days. We’ll still take it week by week or day by day. It doesn’t totally feel like the amount of time is a for sure thing though. But this doctor has been great.

Tomorrow is Kevin’s follow up eye appointment. EMSA is coming at 12:15 to take him over there. We’ll see what the doctor says about how his eye is doing.

We also received some paperwork from the Traumatic Brain Injury Association of America. Great stuff, we are busily reading through it all. Good insight and great information.

Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/ (this is the main site address)
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Update #78 on Kevin

So, this week has been exhausting…..overall, we went to around thirteen different nursing centers. We had very specific criteria. First of all, they need to have a Skilled Nursing Unit. They have to be able to take someone with a trach. Prepared to handle someone in a coma. And they had to pass our checklist. We have given permission for a total of three places to do assessments at Meadowbrook. That means they evaluate Kevin’s medical condition, care needs and insurance coverage. Then they approve whether or not they can accept him as a resident. We are currently waiting on affirmative response from two different places. One seems more possible than the other. If accepted, they will probably move Kevin on Tuesday, after his eye appointment.


We will continue to pray for Kevin to be where God wants him to be. Thank you so much for joining us in this prayer.

Thanks for reading,
Matt, Angie and family
_______________________________
http://www.prayforkevin.com/ (catch up on old posts)
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Update #77 on Kevin

Kevin’s blood gas test came back yesterday. We were looking for high CO2 (Carbon Dioxide) levels. They told us the results were great. His O2 (Oxygen) levels were a little bit low, but nothing to be concerned about. Still great.


Kevin got denied from another Skilled Nursing Center. We are wondering if he is going to continue to be denied from any Skilled Nursing Center right now, because his care need is more than most Skilled Nursing Centers would provide. A few of us are looking at a few new locations today.

Also, yesterday, I spoke with the Brain Injury Association of Oklahoma and the Brain Injury Association of American (the Virginia office). They are helping us with resources and support. The National Association is sending us a packet of resource materials, for instance a “road map” of things to expect in the future as well as some Coma Stimulation techniques and helps.

Work is continuing on Kevin’s (and family’s) house. The bathroom is done. Next up is the vinyl flooring in the kitchen. The insurance is not going to cover the cabinets in the kitchen, so we have a plan for that. If you would like to donate time or money, especially money to that project please give me a call. If you are keeping score….most often we don’t hear from anyone when I put it in an update. It is due to a psychological phenomenon which causes the reader/hearer to assume that because so many people know about the situation that someone else is surely doing something about it, so less people act.

Thanks for reading and praying about all this,
Matt, Angie and family

PS - Loy Johnson…give me a call at 918-850-9828.
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