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