Pain Management

After talking with Dr. Tuch yesterday they got Maddy on a schedule of pain management that is getting more tolerable. Having the Norco available every 4 hours instead of 6 is helping. She still can't stay awake for more than a few hours at a time. Getting nourishment into her is also still difficult but she is trying very hard to eat every time she gets up.

Melissa came and hung out yesterday and was here when the lady from Hopsice came around. That was a relief because it was one less time I had to relay the information. The hospice manager gave us all the information and we are thinking about it over the weekend. The trickiest part about it is that they are not designed to provide life extending medications, such as Maddy's anti-rejection meds. She said everything is on a case by case basis but that eventually we would probably have to stop those if we were in the hospice program. There are a handful of other things we have to think about that I really just don't want to go into in this blog. Suffice to say we are taking the weekend to see how Maddy is and make our spdecision on which direction we go in next.

On a brighter note, Ethan and Alex paid Maddy a visit late in the afternoon and into the evening. Maddy was sleeping for much of the time they were here but she got up and chatted with then for about 2 hours before they left. She was in good spirits for much of the visit and didn't start having unbearable pain until toward the end. It was nice to see them making each other laugh for a while. Ethan and Alex promised to come back today and bring Maddy a boba tea. She is looking forward to that.

Melissa came back a little after 8 last night to spend the night so I could go home and start getting things ready for Maddy to come home. She reported that Maddy was able to get a good night sleep on the new long acting pain medication Dr. Tuch ordered. Not much luck getting her to eat but that seems par for the course these days. Melissa hung around until a little after 1:00 today so I could run to Ikea and get Maddy a bed. When we moved Maddy chose to go from a futon to a mattress and it was easy for her to just use it on the floor without a frame. If we are going to have nursing help I want her to have a bed up off the floor. So I found a cute little frame at IKEA and hopefully I will be able to get away for a bit tomorrow to put it together.

That's about it. Things are pretty slow at the moment. I'm a bit worried about Maddy not having any energy but I guess that's to be expected. I was really hoping these steroids and antibiotics whould give her a second wind so she could get back on her feet again but so far it's not looking good. Also her tremors are getting worse. I don't know if it's from the steroids or what. Usually she gets them from her anti-rejection meds (prograf to be precise) but they haven't been giving them to her because levels have been too high. I was hoping to ask the doctor about it today but Melissa said he didn't come by, unless she missed him somehow. Guess i'll try again tomorrow.

I guess that's all. As always thanks for the thoughts & prayers.

 

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