A LONG Week

We pledged to keep you updated so here’s an update. Further down, I’ve posted a picture of Mike, taken last Saturday. It’s waaaaaaaaaaaaaaaay down at the bottom and not for the fainthearted.

As this disease progresses, we’ve known that one reality is constant pain. The pain comes in the center of the body so it radiates out to all parts. With every bit of “it’s stable,” has come a need to bump up medications for pain.

And although Mike is not in a clinical trial, he is a bit of an experiment….not many people have survived this long with this disease.

The disease-related diabetes, the medication-related indigestion, the over-the-counter remedies added to those hefty prescriptions……it’s going to make quite the tale in some medical journal someday. But, for now, it’s our life and----let’s be straight here---our dying and death.

Mike had been uncomfortable last weekend and by Monday night, he was doubled over in pain. He called his doctor and she told him to get to the hospital. Unlike other trips we made on our own, this time she called ahead and they were waiting for him.

He was whisked up to ‘his room,’ where IV machines stood at the ready. And the liquid miracles commenced. There would be much tweaking in the following days. He had announced that, no matter what, he would be going home on Friday. Of course, he had ordered me to school. He sent a message that he was ‘admitted’ but that I was NOT to leave school.  

The man I married.

The teacher in me steps forward when I’m at school. Mindful that something may be brewing across town, I duplicated the final exams and filled in the grading keys. I looked at a stack of papers, still ungraded, and commenced on a less-that-strident reading. (Strident reading can pick up those who copy….at this point, at the end of the semester, oh well.) 

By 2:30, I was at his side, getting updates and so forth. A team of angels fluttered around him, measuring, charting, data-entering. His doctor kept a learned eye on each increase/decrease/output/input and etc.

The goal was to translate liquid calculations into oral medications so he could go home. They started that on Wednesday. It was rocky. He got shaky. Let’s try this….hmmmmm….ok, try that…..

I DID get to watch the teamwork in action as his caregivers discussed back and forth, communicated over to that department, back to this desk, and so forth.

Friday was a make-up snow day for KHS so, no school for me. I was by Mike’s side at 7 AM.  He had had a fitful night and when Doctor Moore came in, she said that she knew he wanted to go home and she’d send him home but she’d feel better if he stayed one more day.

When I get a vote, even a silent one, I defer to the doctor. He stayed one more day. The oral meds worked well and we got ready to go home on Saturday.

I can find little to complain about, when folks are caring for my husband. Really, I could sense an atmosphere of caring. Even the dietary aide (a job with which I’m familiar) wore a big smile and called the hub Mr. Mike. His job, planning Mike’s menu, has gone high tech.

 (When I had this job, we used paper menus; patients had two choices, both grim and both featuring strained squash.)

However, at least two nurses said and did things that caused more concern that we need. I’ll give them grace and judge that they did not realize that sick people who are predisposed to prepare for the worst look for any grimace, any eyebrow raise, any mumble as a sign of impending doom.

One lady chatted with the hub in the early hours of one day. When he said that his doctor told him that, in the end, he will not experience pain, she said something like, “Well, we certainly try. It doesn’t always work out that way.”

I realize this is third hand and he’s taking a lot of drugs; he may have infused her comments. But when he reported this to me, I came back with my usual. “Mike!!! What does your doctor say?”

He then repeated what Dr. Moore had told him.

“OK, then. SHE’S a doctor. She’s YOUR doctor. You trust her, don’t you?”

(yes)

“Well then!” 

Finis

I was witness to the other incident. On Saturday morning, as we are finally, really, going to go home, his nurse came in and I asked her if he had a good night.

“Believe me, I checked on him all through the night. I’ve never known of anyone taking this much morphine. It’s 3 times, at least, the maximum.  I checked to make sure he was still breathing.”

She smiled.

She left.

Oh, fine, thinks me. (yes, I know) 

Do I have to monitor him all through the night???

end of a long week

So, when Doctor Moore checked in, I asked her. She was flummoxed. Almost:

“Only one nurse up here has any experience with patients like Mike. They usually deal with pain from gall stone or kidney stones. This is different. You do not need to check his breathing during the night.”

Thanks.

His doctor is also an excellent teacher. 

So home we went and home we are. Mike’s new medication regime is, well, new. I wrote it all down. I may even make a spreadsheet. But we’re good today.

For today. And thanks for your continued prayers and support.