Sunday, December 20, 2009

Update #112 on Kevin

When we last left you, we were faced with four hours of us being alone with Kevin. No nurses, no doctors, no therapists…just us, family, non-professional, barely trained, imperfect family members filled with trepidation. We made it. Kevin was coughing quite a bit, sounding gurgly (the technical term) and we decided to give him an impromptu breathing treatment. It seemed to help subside the coughing. That night the nurse got there around 11pm and we took the opportunity to get some sleep. That night Kevin threw up several times around 3:30 AM. Around 6:45 AM someone woke up for the shift change (another nurse took over for the night nurse).

That day, Saturday, we got Kevin up in his temporary chair with the nurse and Kevin seemed to be having a decent day, however, we decided to switch back to the familiar style of suctioning with a sleeved catheter because he was still coughing quite a bit. This style of suction is easier to do periodically throughout the day as he needs it, without going through setting up a sterol environment, it is covered in a see through plastic sleeve.

At 3 PM, the nurse’s shift was over, leaving us once again and the helm of Kevin’s care. This time it was twice as long for eight hours! That evening we continued turning Kevin, giving him his meds, using the hoyer lift to get him in his chair, caring for him, suctioning him and giving him breathing treatments. By 11PM Saturday night we had made it yet again. Another nurse came and took the night shift from 11PM to 7 AM.

This morning, Sunday, Angie and Taylor got up early to give Kevin his meds and a bath. Then while everyone else went to church, I stayed with Kevin, completely by myself. Wow, talk about someone’s life in your hands. It turned out fine. We watched a sermon together, then I played some worship songs. I did everything he needed me to do. I even found time to fold the laundry and have some breakfast. When the nurse left at 7 AM this morning, it launched a new challenge for the family. We wouldn’t have a nurse again until that night at 11PM. That’s sixteen hours!!!!! First four hours, then eight, now sixteen! The challenge was getting bigger and bigger. After a long day of care, we made it. A nurse came on at 11PM. That nurse leaves at 7AM and another one arrives and leaves at 3PM tomorrow afternoon.

The fear of doing everything for Kevin is lessening, but that doesn’t mean it’s not there and will go away anytime soon. We wonder how often we will getting ‘free time’ during this phase of Kevin’s recovery. And yet we will soldier on.

Tomorrow, December 21st, is the anniversary for myself and Angie. We have been married thirteen years. I know when we stood in front of all our friends and family that we had no idea what would be happening thirteen years later. Kevin and Greg were my bestmen, and they stood behind me as we made our vows. All the family is pitching in, but I know that God has given me something very special in my wife, Angie. She has been more than one could ever expect in a tragedy such as this. Tomorrow, Kohl will be here while the nurse is here, so that Angie and I can go and spend some time together during the day.

Throughout the week, the nursing hours will continue to dwindle until there will be no nurses on Christmas Eve or beyond. We would love to have nurses continue on, but insurance will not pay for it. I’m not sure how we will overcome being stretched and challenged in this phase of Kevin’s recovery, but by the grace of God we will.

Thanks for reading and praying,
Matt, Angie and family

Friday, December 18, 2009

Update #111 on Kevin

So far today has gone really well. About an hour ago, Kevin finished about a 45 minute coughing spell. He was able to expectorate well and we gave him a breathing treatment. About ten minutes the day nurse left. We are now alone and fully in charge of Kevin’s care until 11pm tonight. They are weaning us off private duty nurses.

Kevin is sitting in his chair and resting. We’ll be putting him back to bed in about 30-45 minutes and later tonight give him dinner.

Thanks for reading and especially praying,
Matt, Angie and family

Update #110 on Kevin

So, we brought Kevin home to his house on Wednesday night. It’s been a little over a day and a half and things seem to be going fairly well. Of course, there are the added care concerns, but for these first several days there are home health care nurses. After a week, nurses and therapists will be limited to a few visits per week.

We already had a great response for the gloves that I mentioned in the previous update. Some of the latest things that insurance doesn’t seem to be going to cover is a blood pressure cuff, pulsox machine, stethoscope and an over the bed table.

We have been organizing all the medical supplies that have been delivered and putting together cabinets to hold them. Tonight we put together four chairs, a dining room table, two cabinets, a shelf and vertical blinds on the patio door. I spent several hours trying to scan documents to send to our nurse advocate. The first two tries resulted in no scans showing up on the computer. I tried an alternate method and I finally got the scans at the end of the business day.

Kevin is doing well. We don’t have a neuro chair at home, but we got him up in a gerichair for a couple hours today. It’s interesting, because there is no safety belt, nor headrest. He tends to slide all around on it. He has coughed some, but almost always coughing out what was bothering him.

Several family members noticed alertness, as well as the nurses that have been here so far. Today, one of the nurses told us that we were doing a marvelous job, at less than twenty four hours in. He said usually families aren’t this organized for three to four days and sometimes a week. That felt good, even though it seems like we have many more things to do.

We brought home two more trash cans. It seems we need them.

Last night, after we brought Kevin home, I had a very vivid dream that he woke up. He didn’t just wake up, but he was moving around, talking and acting like normal. In the dream, we were discussing whether or not he should know how long he has been in ‘out’. I even dreamed the question, what do you remember the weather being outside, hot? Cause it’s not now! I remember thinking towards the end of the dream if I was in fact dreaming, but it felt too real to be a dream. Then I woke up.

Please pray that Kevin continues to progress. Thanks for reading and praying,
Matt, Angie and family

Wednesday, December 16, 2009

Update #109 on Kevin: Going Home Today

So it’s official. Unless there is some major issue, we are taking Kevin home today around 4 PM. Thanks for praying for Kevin and our family. Kevin is sitting in his neuro chair one last time right now. Soon his custom wheelchair will be delivered, but until then we have a geri chair at the house. We are working out issues with the hoyer lift we have and deliveries of supplies and food are being made today and tomorrow. Please pray for the nursing staff that will be taking care of Kevin throughout the next 7 days. The first two days someone will be there 24 hours/day. The next two days someone will be there for 16 hours/day, the next two days there will be someone there for 12 hours/day and on the 7th day someone will be there for 8 hours. After that, they will move to a thrice weekly schedule.

Pray as we enter this next phase. Pray that everything gets delivered that needs to be delivered. Pray that Kevin continues to heal and progress, so that he can be admitted to a brain rehab center.

Thanks for reading and praying,
Matt, Angie and family

PS – Does anyone have any extra vinyl gloves hanging around???? We could use a few hundred sizes medium, large and XL.

Tuesday, December 15, 2009

Update #108 on Kevin

It is with somber mood and mixed emotions that I write this, possibly the last update at Meadowbrook. It started with news today that his third TB sputum test came back negative. The doctor told us that his blood tests look good, Kevin seemed to be doing well, and that we could start looking at a discharge tomorrow afternoon.

Wow, that was this afternoon… has seemed like a whirlwind since then. It has felt so quick. I know we have been here for awhile, but this weekend we didn’t even know when we would get results back for TB, we were told at the end of last week that it could take as long as 2 to 6 weeks, and one staff member even told us that they thought it would be bad medicine to send him home prior to getting the final results. Now, we are scrambling to get things in place. There still seems to be several things that need to happen before he can be discharged tomorrow.

Last night, Kevin threw up about twelve times. A non-RT staff member suctioned him several times and the vomiting started happening between the 2nd and 3rd suctions (yes, there was a bit of spit up at the 2nd suction, and yet they continued giving him a couple minutes to recuperate in between). It took Kevin a good hour and a half to settle down. Also, after checking for residuals, the charge nurse left Kevin’s feeding plug open. Angie found bile spilling out all over his clothes.

We are talking with a couple doctors about taking Kevin on. We hope to hear back from them tomorrow. We are also trying to get the hoyer situation straightened out at the house. They brought a hoyer to transport someone that is in a sitting position from bed to chair, but Kevin needs a hoyer and sling that transports someone laying down. The bed that was delivered to the house was making these jarring popping noises that sounded like the bed was coming apart. We called the Equipment company to come and take a look at it only to find that it had been put together askew and the railing was hitting the bed and springs making the noises.

There have been some very good moments here at Meadowbrook and some very trying ones as well. Today I tried to soothe a relationship with a staff member who had taken offense at a misunderstood question that I raised. Upon passing her in the hall, I told her I was sorry that it had happened and would have gone on, but she continued to walk by me as I spoke. When she got about twenty paces down the hallway, without turning around to face me, said “whatever” and continued walking away. Whew…..

I read back over the first posts after arriving here and thought about all the things that had transpired here. Many friends have been made. Many statements of encouragement were given us. When Kevin arrived here three months ago, he had just started opening his eyes, was still on a respirator and had C-Diff among other ailments. His chest tube hole was healing as was the skin over his skull fracture. Since then, he started yawning, moving his eyes more, getting over muscle spasms, getting through times of fever and recently begun responding more often to vocal commands. Several times lately, when I leaned in to kiss him on the cheek he pushed his head towards mine. And several staff members have noted that he seems to be smiling. The right side of his face seems to be getting more movement in it and the left side of his face seems to be loosening up from reflex tones.

Today a few times he has closed his right eyelid when he is resting. He has been doing that more within the past couple weeks, and today he seems to be resting well. Some things haven’t changed though, tonight a couple newer staff members asked me who was older between Kevin and myself. Joking, I appeared appalled and told them I am twelve years younger than Kevin. Kevin has aged very well and has enjoyed that fact. I can’t tell you how many times someone has thought he was my twin or younger brother. Good grief!

As we look to bring Kevin home, our goal is to continue caring for him as he progress with the hope that an acute rehab center would be able to re-evaluate Kevin for admittance in their program. In the meantime our family will lean on God and his church as we forge onward. We’ll let you know if he gets discharged tomorrow.

Thanks for reading and praying,
Matt, Angie and family

Monday, December 14, 2009

Update #107 on Kevin

So, the first TB test came back negative. The second test was to check Kevin’s level of antigens (which bind to antibodies). It showed us that the first test could have been wrong. So then we have to wait for three samples to be cultured from three consecutive days. The final results could take weeks, but initial results have already started to come in. The first two days samples have come back as negative for TB. Today we should find out about the third sample

The past several days Kevin has still been coughing, but not for the extended periods that he was a couple weeks ago. He has also been keeping his food down, except for maybe Friday night. He had spit up/thrown up some, but not sure what it consisted of or what caused it.

Last week he stopped taking Vancomycin, as well as benedryl. Kevin has already seemed less drowsy and more aware since stopping the benedryl. He was also on doribax until this weekend, but was put back on it last night. WE are still researching why he went back on it.

On the radio, we keep hearing songs that Kevin likes. Now that it is Christmastime, we have heard his favorite Christmas song several times. It’s called, “Do They Know It’s Christmas?” and was recorded by Band Aid in the mid-80’s to raise money for Ethiopia. Any time we hear that song, we think of Kevin. And when it’s come on the radio while we’re at Meadowbrook, we play it for him.

Please be praying for a doctor to follow Kevin when we leave Meadowbrook. We have been following different avenues trying to find Kevin a doctor, today a doctor denied taking him on, so we continue the search. We do not feel comfortable taking Kevin home, until we have a doctor on board. Please pray that God would lead us to the doctor that He has for Kevin.

Please also pray for our family. This process wears on you. Some days are good, and some days you feel as if you are being ripped apart from all directions. Thanks for lifting us up.

Thanks for praying and reading,
Matt, Angie and family

Tuesday, December 8, 2009

Update #106 on Kevin

What can I say? Temp nurses are like a box of chocolates… never know what you’re gonna get. Last night’s nurse left waaaay to much to be desired and today’s wasn’t much better. Angie stayed up here last night and she literally had to ask for everything that was done last night. His meal time was 2 ½ hours late. Angie had to ask for eye ointment to be put in the eyes almost every time. She found his feeding tube open this morning after that nurse had gone. There was liquid food all over Kevin’s gown, etc….. Today wouldn’t have been better if not for some other staff members who stepped up and filled the gap.

Tonight has been good. Shift change was at 7 PM. When there is trust with care staff, you can relax. They know Kevin and they know what they are doing. You trust and then you can breathe.

Kevin is laying in bed and relaxed. He moved back into bed from his neuro chair about an hour ago. He is settled and had dinner through his feeding tube. I just looked over and he is alert and eyes wide open, so I turned on some TV. He may not be sleepy now, but when he gets his next dose of Benedryl, he’ll probably be knocked out.

Today, I met with the insurance adjuster about some of Kevin’s stuff. We have some of his stuff in storage, as we have time to sort through it to determine damage. Not sure when we’ll find time to do that, but several pieces of furniture we were able to show the adjuster today. I also showed her some electronics that were on the floor and damaged by the water. She was very sympathetic to what is going on with Kevin and was a pleasure to work with today.

Before that, I had went to an area minister’s meeting. Lunch was good, fellowship was good and the message was impacting. Angie and I, as missionaries, are supported by several of the churches that were represented. Several of them have also helped tremendously in ways beyond our imagination. A minister from one of our supporting churches brought a devotion about things he has learned in ministry. I’m going to put a summary below…

A. Ministry is really really really really hard. (Christ promised us it would be hard).
B. Trust the Gospel. (It’s God’s kingdom, Sometimes, we want to stand over a seed and yell. To try and woo the seed to grow. We have to trust that God will be Lord of our life, whatever it consists of).
C. Trust your call. (Our call is to follow God, wherever He wants us to be).

All those points hit home for various reasons, but what really stood out was what was said to support the third point. It is that to trust our call, we have to ask ourselves, “Am I interruptible by God?” Abraham was interrupted by God. Jonah was interrupted by God. Mary was definitely interrupted by God.

Mom was released from St. John’s Hospital today. The swelling in her leg has gone down, but it is still a little red and sore. She has to take some prescriptions to continue to the treatment.

Kevin seemed to finally be dozing, or at least receptive to the idea. I failed to mention yesterday, that he is in room #110. But you might ask at the front counter, in case they move him again.

Thanks for reading and praying,
Matt, Angie and family

Monday, December 7, 2009

Update #105 on Kevin

So, the staff at Meadowbrook has moved Kevin again. They did it because they are testing Kevin for tuberculosis. TB is a potentially serious infectious disease that primarily affects the lungs. They started testing Kevin for TB on Saturday with a skin test and samples. The odd part is that they didn’t move him until today. The room has negative pressure, which means it cycles the air out so that it can be filtered. If he does have TB how many people were infected? He doesn’t seem to have many of the symptoms of TB, except coughing and the occasional fever, although I appreciate them checking under every rock. The lung doctor just came in and said she doesn’t think he has TB, but I don’t think that was the final verdict. She said his chest X-Rays looked better, and that is pneumonia may be clearing up. She said it was most likely where he had aspirated (swallowed fluids into his lungs).

When you come to visit, you have to wear masks for the airborne possible TB, then gowns and gloves for the staff infection, which even though is colonized, still comes across as an isolation factor. One plus for moving into the negative pressure room isolation room is that it’s a private room again.

Kevin has both eyes closed right now and seems to be really resting. Usually, he doesn’t close the right eyelid on his own. Sometimes he does though and this is one of those times. Sitting here, I have seen his right arm move a little, his left arm twitch, his head rock back and forth a bit and just now his right foot moving. I remember the first few days just wishing to see anything move.

My mom is still in the hospital. They started treating her for cellulitis. Then for staff infection. Now they have her foot on a cold pack and can’t figure out what is causing the swelling. Angie and I finally got to see her yesterday afternoon. We took her a Sunday paper and went to tell the nurses they left the water out of mom’s ice/water chill pack. They have her on Vancomiacin for whatever it is that they don’t know yet. They have Kevin back on Vancomiacin for the pneumonia and possible TB.

Kevin is also on benedryl. If his physiology is anything like mine, it will make him drowsy, which he seems to be. Hopefully soon, we will know if Kevin has tuberculosis or not…that way we can get rid of these hot and humid masks.

Thanks for reading and praying,
Matt, Angie and family

Saturday, December 5, 2009

Update #104 on Kevin

So Kevin coughed and coughed again last night. He threw up his dinner too (can of food). His fever came back again, getting up to 103.

We think they delivered the wrong hoyer lift and/or sling. This one is for transporting someone who is sitting up. Kevin is not, he is laying down when he is transported.

The pulmonologist came in again today (batting 2 out of 6 days, but two in a row is great!). He wanted to do a TB test for Kevin. He also is treating him for pneumonia.

Mom is being treated for a staff infection now, even though she hasn’t been told what the latest cultures have discovered. She said her swelling had gone down some, only to go back up later in her leg.

Pray for Kevin to have a restful night of sleep tonight. Pray that communication happens so that Kevin gets into the neuro chair twice per day, not more than 2 ½ hours at a time, and is monitored for when he goes to the bathroom.

Thanks for reading and praying. Have a good Sunday,
Matt, Angie and family

Friday, December 4, 2009

Update #103 on Kevin

We’ve been requesting a pulmonologist since Monday. Kevin has been having so many coughing bouts and throwing up, etc… that we wanted to have one of the pulmonologists see him. Finally, tonight, the pulmonologist came in. This was after I went to the charge nurse and told her that this was becoming a ‘delay in care’ issue. It’s interesting, if you know the right phrases, how quickly they will fulfill your needs. The pulmonologist didn’t like what he saw was coming out of Kevin’s lungs, and thinks there is most likely an infection, like pneumonia. He is ordering blood work to be done, and thinks Kevin should get some medicine to combat this. The pulmonologist thinks that is why he has been coughing so much.

Even tonight, Kevin was having another coughing spell. Coughing, then throwing up his food. His food comes in cans and is given to him through a tube directly into his stomach. They have been trying to get him calmed down with meds and breathing treatments. He also has a fever tonight of 103. They were going to give him Tylenol to break the fever.

They have been trying to change medicine throughout the week to see if there is something that is making him vomit. Took him off Metamucil and put him on Colace (I think that’s it). They also took him off Vitamin C and increased his reglan.

We continue to search for the personnel on a home health care team of doctors. We have called a few, sought out several, but still have not heard back from them. The rest of his care team is being shaped too (nurses, therapists, suppliers, etc…).

A few pieces of equipment were delivered to Kevin’s house today. A hoyer lift (it is hydraulic), a geri chair (temporary until Kevin’s wheelchair is done – a few weeks), and a hospital bed. The bed is okay. I am not impressed with the swimming poolesque air mattress that lays on top of the mattress. It is supposed to prevent bed sores, but I have my doubts and concerns. We have raised and lowered the bed. A few times now, as it was going up or down or into position, we hear the motor humming “zzzzzzz” then a loud POP! It sounds like something is breaking on the bed. It has happened when it is moving into different positions.

Since we have moved into the new room, we seem to have had issues every day with his nursing care. We have to follow up on things constantly, like eye ointment, and the time to put him in his neuro chair. There have definitely been some shining moments though. Those are the times, when we lean back and go “ahhhh” as we leave Kevin in the capable hands of those staff members we trust.

I got permission for female family members to stay with Kevin at night, so that opens up more than just a couple of us in a weekly schedule.

And on a note on our mom, they have begun a new antibiotic for her cellulitis. I guess her blood cultures came back and they found a medicine that works better than what she has been on. Not sure when she will get out of St. John’s Hospital.

There still seems to be a myriad of tasks to do before Kevin gets to go home, like finding a generator. And we want him over any infection before he does.

Thanks for reading and praying,
Matt, Angie and family

Tuesday, December 1, 2009

Update #102 on Kevin

My stomach aches as I write this. No, I haven’t contracted an illness from the hospital, that I know of, but things have continued to swirl violently around us. Things feel like they are caving in around us. We got the heater at the house fixed yesterday, then this morning I find out that several of the outlets in the house have stopped working. This is so far in only two rooms, but one of which is the living room, where we intend to put Kevin when he comes home. We called around and got an electrician company referred to us and they are working on the outlets as I type. While Kevin and my mom are both in the hospital, we found out that someone else close to us may have some medical issues that need to deal with right now. Some discouraging news also came our way this afternoon which continued to push the invisible walls in on us. It doesn’t feel like we can handle everything that is being thrown at us.

I have been calling doctors all throughout the day, looking for a general care physician, internal medicine doctor or physiatrist to follow Kevin once he leaves the hospital. Our goal is for Kevin to progress to the point that he can be accepted into a rehab center after some time at home. The rehab center said they could reevaluate Kevin’s condition after a couple months, it has been a month almost since they evaluated him. Kevin has started following more vocal commands, since then, such as squeezing hands and sticking out his tongue. He doesn’t do it every time, but we don’t know if that is because it is really hard for him to do, or his brain won’t allow him to do it every time or why. We continue to hope and pray for full recovery.

Kevin is actually doing better today than yesterday, which is encouragement to us. His night nurse noted that Kevin would pull his head away when she went to put eye ointment in his right eye. She said that showed signs of perception. I asked her to document that and she said she would. He coughed intermittently last night, but not for very long each time, just enough that it would spook me being gunshy after his 2 ½ hour long coughing episodes yesterday. Today, he did very well, only starting a short coughing bout and so the respiratory therapist gave him a treatment of lidocaine quick enough that it resolved the coughing.

On a lighter note, I don’t actually think that they are trying to get rid of us. At the very least, I will give them the benefit of the doubt. Some of this I know, some is what we have discovered and some is guessing on my part. Apparently, the new occupant of Kevin’s previous room is someone who could be a danger to herself, which makes it imperative to be in the one room that has a window off the nurses’ station. Also, since Kevin is still under isolation because of the MRSA staff infection (which is colonized, but still considered isolation) it makes his options for rooms that much more limited. He had to go into a room that was already under isolation….for what we don’t know though. A new room means new staff. The hospital is staffed in zones, and there were only a few friendly faces throughout the day. Other familiar faces checked in on us throughout. The room is much smaller, but they were still able to get Kevin into his blue neuro chair today.

I just spoke to my mom at St. John’s Hospital. Her leg still hurts. However, they are talking about releasing her tomorrow. Apparently, the biggest thing was to get IV fluid in her. They were giving her antibiotics through her IV, but they have now ordered oral antibiotics so that she can take them upon release.

Our faith, hope and trust is in the Lord. He will make our paths straight. He will care for us in ways that we could never imagine nor hope for.

Thanks for reading and praying,
Matt, Angie and family

Monday, November 30, 2009

Update #101 on Kevin

It feels like they are trying to smoke us out. They have now moved us into another room at Meadowbrook. Kevin has a roommate now. The room is about one third the size of his previous room. There is one chair for our family, whereas previously there were eight to nine chairs plus an extra bed. I am very thankful that it happened after Thanksgiving. Our family had a great day together that day. A plus of the new room is that there is access to the internet. Another downside though is at night, only guys can stay with Kevin. That means that throughout the week it will fall to Kohl and I. It doesn’t matter, if we lose some nights of sleep in a bed, if that is the best place for Kevin to be cared for. If you are looking for Kevin, he is in room #121 at Meadowbrook Specialty Hospital.

Kevin had some of the worst bouts of coughing to date today. Two times Kevin coughed for about 2 and ½ hours. That’s a total of 5 hours. Nothing seemed to calm him down. They tried several treatments of lidocaine. They suctioned him, sometimes he produced something, sometimes not. It didn’t help. He would wheeze and gag and cough violently. He would cough up secretions and a couple times, it made him throw up bile. At least once, he spewed billed from his trach tube. We have been told that with his current (cuffed) trach, he should not aspirate (inhale fluid into the lungs), but today we were told that it is somehow possible. Which is it? Who is right? All I know is that he was vomiting through is mouth and trach today.

Not sure why we did not find out until today, but apparently, the pulmonologists (lung doctors) have signed off on Kevin at Meadowbrook. That means that they are done checking on and determining medical treatment for him. Why would this be since for about a week and a half now he has been coughing and coughing up secretions (having more ‘bouts’ of coughing than before) and producing all kinds of secretions (thin and thick)????? It would seem to me that now is the time for a pulmonologist to be treating him. We requested today that pulmonologists start seeing him again, especially since he has been having the issues of coughing.

We had a repairman check the heater today. It was the fan. They are billing us. I think it is going to cost somewhere between $350 to $450. But now there is heat for Kevin, that is when he comes home.

Our mom has cellulitis. It is a common potentially serious bacterial skin infection. It appears as a swollen, red area of skin that feels hot and tender, and it may spread rapidly. Skin on lower legs is most commonly affected, which is where it is affecting mom. Left untreated, the spreading infection may rapidly turn life-threatening. We’re glad mom got medical attention when she did. They have her on IV antibiotics (amoxicillin) and are waiting on blood cultures.

The smoking us out could be a conspiracy theory.  But who doesn't love conspiracy theories?  Thanks for praying and thanks for reading,
Matt, Angie and family

Update #100 on Kevin

Update 100......not sure what I think about the fact, that we have done 100 of these.  Or the fact that this has lasted so long that we needed to do 100 of these.  But here we are.  The weekend was full, but I'll try to be short.

We got a call on Wednesday from the Medical Equipment company.  He told me that he received the paperwork from Meadowbrook and that he didn't think that there was any way that Kevin's insurance would pay for a air lossless mattress.  He started telling me about a backup bed, that is similar to a memory foam mattress.  I told him that we did not feel comfortable moving forward without talking with case managers who were already gone for the holidays.  We will be dealing with that today.

Thanksgiving turned out really good.  The family spent the day up at Meadowbrook with Kevin.  Angie's sister, Mary Ann, organized a thanksgiving feast for our family.  Family and friends helped make a dinner so special that it helped to salve the knowledge of where we were eating it at.  We ate Crackerbarrel for dinner and played games together.  We hope your Thanksgiving was at least as special.

Kevin is still throwing up.  It happened late Saturday night.  They aren't sure why.  We need to understand why he is throwing up before we bring him home.

He continues to have a cough too.  These coughing spells will go on for as long as 45 minutes, where is coughing up some stuff, but not always.

Our mom, Jeanne, got admitted to St. John's Hospital last night.  She has been having redness and swelling in one of her legs for a few days and got it checked out.  It is some kind of infection.  They are doing tests and cultures on her.  I think she is in room #1242.

The heater stopped working last night at Kevin's house.  It sounds like it is still coming on, but no air is coming out.  It was 60 degrees this morning.  This obviously needs fixed before Keving can come home.

Kevin has an eye doctors appointment today.  He will be checking the progress on Kevin's right eye.  It has gotten a little better, but still stays red, even with the eye ointment in on a regular basis.

Lots to do, lots more than this that I am writing too.  Thanks for your prayers.

And thanks for reading,
Matt, Angie and family

Wednesday, November 25, 2009

Update #99 on Kevin

So, it’s the day before Thanksgiving. We are doing more training today at the hospital. I will be staying there tonight with Kevin and the family is coming up tomorrow for us to all spend Thanksgiving together with Kevin.

Even in the midst of all this we have been finding reasons to be thankful.
- We are thankful for those who have come and worked on Kevin’s house so far.
- We are thankful for the money given towards Kevin’s kitchen project.
- We are thankful for those that fixed the heat at Kevin’s house.
- We are thankful for those who are training us well at Meadowbrook.
- We are thankful for the encouragement that we receive.
- We are thankful for the kitchen installers.
- We are thankful for all those who worked on the house in many various ways.
- We are thankful for the progress that Kevin has made, even if it is slow.
- We are thankful that Kevin has not been throwing up the last couple days.
- We are thankful for lots more too.

The medical equipment company is supposed to bring the equipment over on Friday. Our next target for bringing Kevin home is Monday. We will keep working on the house and training until then.

Thanks for reading and praying.
Matt, Angie and family

Monday, November 23, 2009

Update #98 on Kevin

This morning has been another roller coaster. I wonder at times, at what point that becomes normal. After several meetings on the phone and in person, here at Meadowbrook, I think that we may have reached a milestone when it comes to family training. At all times, whether our family is watching or practicing care techniques there is to be someone in the room from the staff. When we are trained in something and are signed off as trained, we do not become responsible for that task. Each task is still the responsibility of the hospital staff. Kevin’s doctor, who learned of this trend this morning, described it this way….we are ‘not responsible for running a hospital’. We are being trained for home health care. We are learning and being supervised. But the staff is still charting and following schedules of medicine, turning, etc…. Some of the confusion of training was cleared up today as well.

I made someone cry this morning. Now, let me be fair, I never once raised my voice, and I was calm the entire conversation. That may not always be the case, but it was today. I dared to suggest when asking a question about inconsistency that something had not been done that was supposed to have been done. Asked to leave the office, I stood dumbfounded as to what had just happened. We were told to do one thing in home health care, when we hadn’t seen it done here at Meadowbrook. So, asked how imperative it was to do it, and if it was why it hadn’t been done so far here. Someone else eventually answered the question.

Two people have sent us links about a medical breakthrough going on in Europe. There is a man who was misdiagnosed after a severe traumatic brain injury, after having a new type of scan. Here’s a link to the story He was misdiagnosed for twenty-three years.

With a time crunch to get Kevin’s stuff out of the restoration company’s storage, repairing and preparing the house, training at the hospital, we are able to hold our heads above water only due to the grace of God. People are screaming at us on all sides. There interest is the most important to them, so it feels like everyone wants everything done at the same time. We are holding together though. Thanks for the prayers and encouragement.

Thanks for reading and praying. It means so much to our family during this crisis.
Matt, Angie and family

Sunday, November 22, 2009

Update #97 on Kevin

Kevin is still at Meadowbrook. I think everybody involved (ie doctors, family, etc..) is realizing that it takes time to prepare to do home health care for someone. Last week, Kevin threw up several times. They were a few times that he aspirated (got it in his lungs). After doing an X-Ray last week they saw he has some pneumonia in his lungs now. Taylor texted us this morning with the news that he was throwing up again.

We found a storage and have been getting Kevin’s stuff moved there that is not coming into the house. We found mold growing on a couple dressers that we thought we damaged, but the insurance assesser was not going to pay for those. Can I just say that most days as of late, I struggle with hating insurance companies?

We tried really hard to get Kevin’s house to a point where some of us could start staying there (Angie, the kids and myself). Many volunteers were working on the house last week. We worked all day Friday, but it wasn’t quite okay to move in, so we crashed somewhere else. This morning is the first morning that we woke up here. There are still things to be done, as we prepare for Kevin coming here.

The past several days have been a mixture or training, moving, and being frustrated at the training process that keeps changing and yet remaining inconsistent. We hope that a meeting on Monday will help clear that up.

In one of the times when Kevin was throwing up, Angie was calming him down. She saw tears start coming out of both eyes and a look of realization about what was going on. We haven’t put any ointment or drops in the left eye for weeks, it was tears. While we don’t want Kevin to throw up or feel bad. Seeing tears, shows another ‘new’ thing that Kevin is doing and continuing to progress.

Have a great Sunday. We’ll be at Highland Park Christian Church. What will you be doing?

Thanks for praying and reading,
Matt, Angie and family

Wednesday, November 18, 2009

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

Monday, November 16, 2009

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 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.

Matt, Angie and family

Sunday, November 15, 2009

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

Friday, November 13, 2009

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

Thursday, November 12, 2009

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

Wednesday, November 11, 2009

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

Tuesday, November 10, 2009

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

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.
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.
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.

Matt, Angie and family

Monday, November 9, 2009

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

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

Saturday, November 7, 2009

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

Friday, November 6, 2009

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

Tuesday, November 3, 2009

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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Monday, November 2, 2009

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… 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… 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

Friday, October 30, 2009

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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Tuesday, October 27, 2009

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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Monday, October 26, 2009

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
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Friday, October 23, 2009

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
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Wednesday, October 21, 2009

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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