Greacey Palms Update

So much has happened in the last week, I can hardly believe how full the time has been.

You loyal readers out there have been so wonderful over the years, and particularly in the last stretch, supporting Karen and I as ALS tosses us about like mice in the jaws of a powerful animal.

I have to keep this brief because I am so busy caring for my wife, but I have to tell you that things are not good.

Karen's breathing started to be affected perhaps 6 or 8 weeks ago and in the last 10 days its hit a critical juncture.

She is now using a Bipap machine full time to help her breathe, and the future looks grim.

A couple of days ago I asked her, "Maybe we shouldn't have come to Florida, the trip was so hard on you. And on me too. Do you think it was a mistake?"

"Absolutely NOT!" she replied. "It was my wish to return here and you made it happen for me."

And the 'you' in that sentence applies to all of you supporters out there.

The first few days here, we were so tired out, but we got the house up and running. Divana is here, and she's been just wonderful. We got to sit out some and start to enjoy being here.

The hoyer lift and wheelchair finally arrived on Wednesday, and thank goodness I'd purchased the Multi-lift and Easy-base - it saved our bacon on the trip, and for the first 6 days here.

We hired a private Home Health Aide who has been very reliable and hard working. She's here 2 hours in the morning and 2 hours at night, so I finally have some relief from the heavy lifting of moving Karen around between chair and beddy-byes. 

But then Karen woke me up one night at 12:17 am with a catheter problem again. It was blocked and her bladder was full to bursting. I flushed it a couple of times and we made it through the night.

The next morning, I found a nurse in the park that could change it out and we got that done, and then it blocked again. Another flush, and finally it was working.

The next two days were occupied with Karen probably passing a kidney stone, even as her breathing was getting to be more of an issue. It was the whole nine yards, blood in the urine, 10/10 pain, and so on. She didn't eat or drink much during this time due to nausea.

Coming off of that, she had her first real breathing episode and went on the bi-pap for a while.

Portable amp batteries were flat. I played for her anyway.

I can't remember all the events in the last 3 days or so but she is hardly eating or drinking and can't manage without the machine to help her breathe.

I've found a for-pay palliative care team to help us out, and a doctor is on his way this morning to check her over.

Karen and I have had some long talks and covered a lot of ground, but this is happening so, so fast.

The best help.

My niece Lamondo came down to help on the weekend, and the Quad Queen's sister arrives today.

Keep Karen in your thoughts. I wish I had a better post to write.

Our moment in the sun, the day the dream came true.