A Rocky Routine
Within a few days mom was approved and scheduled for her HBOT. Unfortunately, the times were going to either overlap with the infusion clinic or leave us with, what I can only compare to, a really long lay over after a horrible vacation . The good news is, that didn't last but a few days before we were able to coordinate between the two clinics to develop a little more favorable schedule. Now we could sleep until at least 6!
By the end of the first week we fell in to a rather rocky routine.
9:00 PM - Bed
11:30 PM - (take pills)
2:00 AM - (take pills)
5:00 AM - (take pills)
Even with the obvious lack of sleep (for both of us), mom seemed to be getting better.....again. Mom was now able to get up in the middle of the night by herself to use the restroom and take the pain pills I had set on her bedside table before I went to bed, usually 2-3 hours after she did. The first few nights I listened intently through the monitors I had placed in her room to make sure she didn't fall or need any help. Soon I was sleeping right through it. Definitely better for the exhaustion level!
With gentle reminders to "tuck her butt" or keep her "nose over toes" she did very well, and seemed to be improving each day. The pain wasn't gone, but between the pain medications that she was still having to alternating every couple hours (with not a lot of relief) and her sheer determination, she was actually getting along better than I would have dared to hope a short time before. I was still worried though.
I was worried enough that, more than once and more than one doctor, I asked a question that I didn't think I wanted to know the answer to. "Could it be cancer"? I asked on a number of occasions. I hoped that wasn't it more than anything. From previous experiences with loved ones I tend to look down the cancer route when there is no other explanation for pain and/or sickness.
I was assured on each occasion that they saw no reason to believe she had cancer, or to even run any tests for it. I had watched 3 people succumb to cancer over the past twelve years or so. At least two of those people may have had a different outcome - a "fighting chance" - had the diagnosis been made much sooner and the treatment more aggressive (if they so chose).
I worried about it constantly.
Why did she keep getting that infection? Where was it coming from? The pain shouldn't be that bad, should it? With all those narcotics the pain should have subsided, shouldn't it? And they weren't even really working - mom was just working through it.
I heard the acronym CHF thrown around more than once.
. She had a bout of pneumonia so bad that it was a miracle she was alive.
A compression fracture,
She had been diagnosed with an staph infection (for that we already had a specialist)
and had become "septic"
Why were there no referrals to any of these specialists?
I need to remember to talk to her primary care doctor about that.
I need to make him understand how important it was.
I had managed to make an appointment with her doctor that we were able to work around the infusion clinic and the HBOT clinic. I decided that I would make asking for referrals a priority during that visit.
Will he give us the referrals? Am I going to offend him? How long will it take? Who will he refer us to?
Again, more questions than answers.
Again, frustrations at our lack of progress.
Again, I am feeling lost.
Well, mom was getting better, in spite of all she'd been through. That's good. She will need to be better to survive what's surely yet to come!
What is yet to come?
I hope you will join me again to find out!
Have a great day.
Oh, and tell your parents you love them! Let them know you appreciate them!!