March 30 - Muscle Relaxers and Hospice Frustrations

The muscle relaxers seem to be helping a little with pain management in addition to muscle relaxation, once we settled on one Gary would be able to tolerate and not decline further from. Downside is he is more tired.

It's been very frustrating over the past couple weeks. The urine sample I finally got on my own, after multiple unsuccessful nursing attempts stabbing him with catheters to gather a sample, did show an infection...and that was no surprise. He was initially only put on a 5-day Bactrim liquid, then on Day 4 he was still running a fever. After a string of frustrating and insulting events over Gary's fever with only non-narcotic Bactrim on the line, they added 5 days to the regimen (first and last interaction with nurse Judy). We are now on day 8, there is still debris/puss in his urine, he's still running a low-grade fever, and is saying it hurts every time he goes. The nurse and nurse practitioner are coming back on Tuesday afternoon, so we'll decide the next course of action then. I believe we're still ultimately working up to having him be sedated to keep him comfortable, though no one is educating me about their thoughts on that to help me manage his pain and discomfort, or if he's building up to a blockage, or what. So frustrating.

He's had several more very good, lucid moments. Most are now early evening until about 10 or 11. We've set up a CD player and he's been listening to all his old favorites, recognizing the artists and the songs. He's having some good light conversations with each of us and misses us when we have to be out of the house.

This is so frustrating and painful for all of us to go through. Still hanging in there.

I've made several suggestions to Hospice about educating their staff about his disease: about making sure they are aware of their patient's conditions before recommending any medications or course of treatment; about specimen collection methods when they can't give you an arrival time within a 3 hour time window; why a forehead temperature reading isn't accurate when your circulation is shutting down and it's a symptom of your disease, etc. UGH!!

I'm tired of being the one who has to point out what should be common sense. It's exhausting...

March 19 - End of a 5-day Awareness Surge

Gary had 5 good days in a row, then last night he went back into his coma-like staring phase. We knew the honeymoon/rebound wouldn't last long and that he would take another step down after all that alertness.

Down to 26cm on his arm. His watch band can go on the smallest hole. Stomach is concave now, and as of last night, he's so stiff that his neck and shoulders are making popping and crackling noises when he moves his head even the tiniest little bit. We are starting him on a low dose of muscle relaxers tonight in an attempt to keep him from spontaneous fractures from the contracted muscles. His pain is escalating and a lot of it now seems to be abdominal/mid back pain, plus he's still shedding a LOT of debris in his urine. We've been unsuccessful in getting another urine sample with a straight cath over the past 48 hours, so we're working on a sample tomorrow morning with a fresh catheter one last time to see if there's an infection we can resolve. If no infection, we are likely at the point where he may have to be continually sedated to keep him comfortable. I'm hoping it won't come to that, but I'm resolving myself to it, just in case. It's not fair to him for him to be in constant pain and discomfort like that.

March 11 - Home Now, with a CADD Pain Pump

Gary's home again as of this past Saturday afternoon. He's on a continuous pain pump with Fentanyl (converted from patches that he wasn't absorbing well). He's up from 25mcg/hour to 37.5mcg/hour with bolus doses of an additional 20mcg every 15 minutes if he needs it. His arm circumference has dropped to 26.5cm. The contracted muscles have improved in his right arm. His left arm and both legs continue to worsen. His temples are even defined now, he's lost so much weight. Still sleeping 20+ hours each day and eating very little. Seems to perk up a bit in the evenings and has very brief conversations before going to sleep between 9 and 10.

Hospice doesn't see any issues with continuing services when he's up for recertification again the first week of April. I have no idea what we'd do without them.

It's good to have him home again, in any capacity. The house is so empty without him. We've had a good preview of what life will be like after he passes, and it is quite depressing and empty.