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