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
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http://www.prayforkevin.com/