When we last left you, BR had entered hospice in an effort to bring his pain levels down. The hospice doctors had taken him off Fentanyl and put him on Methadone, with a modest reduction in pain.
Over the last two months, we have been gradually increasing the Methadone, but aren't seeing further benefits. I'm sure the next steps will include trying a different medication, and we've asked the doctors to start looking into alternatives.
BR's skin sensitivity is really hurting him. This is usually a sign of an infection, but I'm at a loss as to where. He just finished a suite of Levaquin to clear a Cipro resistant UTI. After reading up on Levaquin, it seems an odd antibiotic choice given the potential negative affects it can have on BR's already compromised central nervous system.
At the peak of the UTI, he was passing blood clots in his urine. Pretty frightening at first, but some online research shows it to be a fairly common occurrence among long term suprapubic catheter users. Once the UTI cleared, the clots stopped.
So the increased skin sensitivity remains a mystery. I'm going to start monitoring his body temperature today. Without a secondary sign of infection, like a temperature or cloudy urine, we have to treat the sensitivity as yet another mysterious and disabling MS symptom.
I feel bad saying this, but I've been feeling disappointed in hospice. I heard from so many people that they would swoop in and take care of everything, but that just hasn't been the case. BR's biggest needs are prescription maintenance and counseling. Before hospice, I was able to refill his non-triplicate prescriptions 24/7 at the local Walgreens. Hospice requires 24 hours notice, the refill requests must go through the case manager who isn't always available, and the pharmacy is only open M-F 8-5. Given how easy it is to predict when BR will run out of a refill, I asked the case manager to put a reminder in their computer to automatically order refills, but that request was denied. Given that hospice refills in 2 week increments, the burden on me has more than doubled.
As for counseling, hospice provides chaplains. Now BR takes a while to warm up to a person before he opens up, and just as he was getting to that point, the chaplain fell ill. After three weeks of missed appointments, BR requested a replacement chaplain. I hope we get one soon.
So that's where we stand. Trying to ignore the pain. Trying to keep pushing for what we need. Trying to savor the moments of joy.