GOOD HEALTH is NUMBER ONE

Mr. Ralph had a saying that good health is Number One and everything else is a zero (that follows that single digit).  If you don't have that Number One, you don't have anything.

Remember my brother who went to the hospital on June 27?  He's being "demoted" to long term care (nursing home) as he has not made any progress.

From Sister in Law (on Sat):

Hi, I haven’t updated everyone for a couple weeks because things are about the same. The vent weaning is going very slowly … Mike’s been here at Select Specialty Hospital for 8 weeks. And because it’s going so slowly, insurance is wanting him moved to a LTC facility. It’s all about the money. I’m advocating for him with his case manager to keep him here but at some point insurance will probably win. There are just a few LTC facilities in Mike’s insurance plan that do vent weaning and I have to pick one. 

Surgery refuses to do the diverting colostomy, suggested Mike’s bed sore be covered with a wound vac and that was done on Tuesday. It is a good way to keep the dressing sealed around the wound and keep the stool out. The wound nurse says that, per her measurements, the wound is getting smaller. It looks improved to me too. He still sleeps most of the time. PT and OT work with him a couple times a week. It’s mostly for stretching exercises because he doesn’t really participate in getting stronger. They get him up to the chair twice a day for 2-3 hrs. That’s about it. Wish I had better news. I’ll let you know if there are any significant changes. 😘

I texted back:  (as all of the sibling have been asking each other)

Ah gosh. 😕 Have you talked with his doctors about Mike's prognosis?  

This doesn't sound like much of a life for him. Or you. If they are moving him to less care, what happens when 8 weeks go by and nothing has improved .... where do they send him next? What an awful dilemma. 

Call me if you want to talk. I don't want to stress you out but this has gone on SO long with little improvement 😢

And her response:

Yes, I've talked with the docs about Mike's prognosis. They told me from the beginning, and still tell me, it could take a year to get rid of the MAC. Because of the MAC and being on the vent his lungs are stiff and have some scarring. They say his lungs are like a balloon when you first blow air into it. The balloon is hard to inflate. But if you keep disinflating  and reinflating the balloon, the balloon becomes more pliable and easier to inflate. Mike's lungs need time to heal and do the work on their own which the vent wean allows, they gradually turn down the support the vent gives. 

And you're right, it's certainly no quality of life right now but we have to give his lungs a chance. The docs didn't know if his kidneys would recover and they did to the point that he doesn't need dialysis. He's gone from the ICU to the hospital and then will go to the facility. There's no place to go after that but home. We will cross that bridge when we come to it. 

The docs have no idea if he will be able to ever come off the vent. But we need to stay the course for the months ahead before we will know. 🙏🏻🤞🏻 

Of course I cried a bit. OK, a lot.  And this situation has me talking to those around me about end of life decisions for me.  It also has me doing all the preventative procedures.  Now that the pandemic has let up a bit, I have my mammogram, lady bits exam, colonoscopy, dermatology visit and physical therapy lined up.  I signed up for a diabetes management program but they are totally booked up til summer.  My numbers did go DOWN as I have lost 25 lbs.  If I would just make myself MOVE more, I know I could get rid of that remaining 25 lbs.  Which is why Dr V suggested PT.  I especially need to build strength around my fake knees so that I don't dread stairs.  And work on balance.

I still have the lichen sclerosis which is usually not bothersome.  Last week it was horribly painful so I  used the steroid creme daily for a few days, instead of once a week.  The biggest problem is that it has changed the geography down there which causes my urination to go every which way.  No cure but they offer surgery to fix the landscape ... which I will avoid til the bitter end.  I can't even imagine.