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