Lots of sleeping, lots of pain

It's been a long weekend in the hospital trying to manage Maddy's pain. It always seems to be hovering around an 8 or 9 anytime she is awake. As you may remember on Friday Dr. Tuch from the palliative care (PC) team upped Maddy's does and time schedule for the Norco and started her on a long acting morphine at night. She got her first morphine dose Friday night. The first full day on the new schedule (Saturday) Maddy needed Norco every 4 hours without fail. By Saturday night Dr. Tuch had seen that need and chencpged her to morphine twice a day, every 12 hours. So Sunday morning she got a daytime dose of morphine but her pain levels didn't seem to be getting any more tolerable. By mid morning she had to ask the nurse if she could get any other pain medication as well so they gave her Norco on top of the morphine. She also spent the morning and much of the mid day nauseous. Which is terrible because she not eating as it is.
By 2:00 we were able to get the pain under control and her moving enough to get a yogurt smoothie down her. Then it was right back to napping. She got up on her own around 5 and had the tech change her sheets. I was able to get her into my chair for a while during that time. (See above picture) Maddy even said she was hungry while she was sitting up! I ran to Panera to get her a bread bowl with French onion soup. She was able to eat a little more than half of it.
I keep thinking I will open this blog to post an entry and be able to write "Maddy is snapping back and feeling better" but that continues to no longer be the case. It's Monday morning and Dr. Haddad came by about 7:30. When he asked Maddy about her pain she said it was at a 4 or 5, which is good considering all she has had is he morphine last night at 9PM. He told us the goal was to transition her home sometime this week and that Dr. Tuck and the palliative care team would be handling the transition. That's all I have right now. I will wait to post this after I see Dr. Tuch. Hopefully sometime this morning...
It's almost 11 and the PC team has visited. Dr. Tuch said his team will be working with Hospice today in the hopes of getting Maddy home tomorrow. He said he can change the dosage of the long acting morphine (finally found out it's called MS cotton) to 3X a day to avoiding the pain crisis she has been using the Norco for. I told him I thought she was too sleepy all the time and maybe that would be too much. But I didn't want to step on Maddy's toes or keep her from getting the meds she needs. So I asked if he can order it for every 8 hours but if she doesn't need it that often can she just take it every 12 still. He said that sounded like a good compromise. So when it's due at 4:00 today she can decide if she needs it. There is still a concern that hospice will not cover her prograf and cellcept because they are anti-rejection meds. He asked is we had a bit of a stockpile at home and Maddy is sure she does because of all the time she has spent in the hospital lately. He said that will be our work around if hospice doesn't want to cover it.
Maddy was able to sit up and chat with everyone who came in this morning. But still has not been able to eat anything. She said she is afraid it will make her sick if she eats. She also got up and let them change her sheets again but went right back to bed after. She is napping now. I will post another update again tonight or tomorrow when we have answers about hospice and plans to go home.

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