Update #113 on Kevin

It is not a surprise that many of you are still praying for Kevin and our family. In the last couple weeks we have ridden the full gamut of emotions. Angie and I had a great anniversary on December 21st. Kohl’s car broke down (needs a new engine), so the car we are borrowing has become the only car for this temporary household of five (including Kevin, even though he isn’t going anywhere, errands for supplies have to be run for him most of all). The snowstorm came and shut us in and keeping other family members from being here to help.

Christmas Eve and Christmas Day with no nurses, but we had a great Christmas here at the house snowed in. Kevin got audio books, stocking caps (OU and TU), earphones (for listening to music and books on an MP3 player) and more. We also found out we got another week of eight hours per day of nursing. After a few days of us taking care of Kevin, then a nurse coming for a few days, the snow relented and other family members were able to come around again to help. On December 31st, we found out that another two weeks were approved for eight hours per day of nursing. After that, who knows. Last week, physical, occupational and speech therapists all paid visits to assess Kevin and determine plans for treatment.

Kevin seems to have made the adjustment home really well. He has been off oxygen completely after some conflicting orders were sent home with him. We had a pulsox, blood pressure reader, and stethoscope donated so we have the vital reading equipment set up. When we put eye ointment in his right eye, we also check to see if he needs cleaned, and check his pulsox readings at the same time. Kevin usually has a O2 saturation of 96 and above. Sometimes it is closer to 93, but that is still good.

For the first week he was home, Kevin didn’t seem to have the extended periods of alertness he had been having in the hospital. Around mid-last week Kevin started having them once more and has had several periods of alertness since. In fact, Kevin seems pretty alert just now, after putting in his eye ointment, turning him on his right and checking his vitals (95% O2 and 91-94 HR). In an hour, he gets some reglan and a breathing treatment. In two hours, he gets fed and then turned towards his left. At that point he will be pretty settled and I will go to sleep on the couch for a couple hours, get up check him, put in eye ointment, then turn him to his right again. It will go like that until Angie relieves me at 5 AM. While we have been having almost daily nursing it has gone okay, but at times it has felt like we are at the breaking point…..yeah already. But most of the time it seems to work out. We will continue requesting nurses from Kevin’s insurance to keep Kevin out of the hospital and last week we came up with more plans to progress Kevin’s condition.

One of the things we do is have him help us when we do daily tasks for him. Wrap his hand around the toothbrush and use his hand to do the brushing. Rub his fingers through his hair before we put gel in it. Use his hand to grasp the rag to clean his face and body. These monotonous tasks could be what triggers something in his conscious. They also told us to sing over learned songs to him, such as Happy Birthday and the alphabet. We might try Jesus Loves Me too!

Today, Angie stayed home with Kevin, while the rest of us went to church. They watched a sermon online, which is hooked up to the TV. We had a couple visitors today and a few others since Kevin came home…that’s been nice. It’s good for Kevin and good for us.

Thanks for your prayers. Thanks for your concern. Thanks for the love that you have shown us during this trial.
Matt, Angie and family
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http://www.prayforkevin.com/

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
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http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

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
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http://www.prayforkevin.com/

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.
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http://www.prayforkevin.com/

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…..it 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
_______________________________
http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

Update #106 on Kevin

What can I say? Temp nurses are like a box of chocolates…..you 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
_______________________________
http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

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
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http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

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
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http://www.prayforkevin.com/

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
_______________________________

http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

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 http://www.dailymail.co.uk/news/worldnews/article-1230092/Rom-Houben-Patient-trapped-23-year-coma-conscious-along.html. 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
_______________________________
http://www.prayforkevin.com/

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
_______________________________
http://www.prayforkevin.com/

Pray for Kevin #96

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


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

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

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

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

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

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

Update #95 on Kevin

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


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

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

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

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

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

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

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

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

Update #94 on Kevin

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


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

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

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

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