Yesterday Julie and I brought home JB from the hospital. He could have returned early in the day, but of course the paper work and discharge takes longer than optimal. On top of that there seem to usually be issues with the pharmacy and prescriptions that needed to be filled.
We all rested a bit during the late afternoon and it felt good to be home again. The pain is still present for JB, but the medications do dial it down a notch. This week will bring a variety of appointments, included hopefully is a visit with the pain consultation team.
I am hopeful we can arrange a schedule for taking care of JB's needs now that it appears we are moving towards home care. The mornings and evenings are manageable for me. I just got him set up with his morning feeding while he still rests in bed, and while starting that I am able to crush up the pills he needs and wants (the B-raf trial continues) to take. It takes about 30-45 minutes for the morning 1 can feeding, so here I am blogging a bit while he is 'eating'.
Julie will be here most of the day to work on scheduling appointments and taking some of the details down for this week. I believe other family members might pop over for a visit as well.
As a nice night cap to the weekend and perhaps a reward for JB's discharge from the hospital, we had many family and friends visit last evening. It was a warm and loving crowd of people. JB managed quiet well with all the energy and demand for attention. And many of our friends and family got to see him in person and see his feeding in action. Sometimes it helps to see the situation first hand to fully understand what JB has to deal with. Certainly most of us by now know, but if anyone has not seen JB for over 6 months I am sure the change in his body as a result of the growing tumors and his underfed body would be shocking.
Thus we continue, with perhaps a clearer focus on what is important. Our main goal is pain management and optimal comfort while we worry less about him getting his work done or dealing with stressful routine issues. We also have a goal of increasing the support of home nursing care as well as family and friends to maintain some acceptable level of supervision and company for JB. Perhaps a few weeks and months ago it was okay for him to be home during the day and take care of his own needs, but it is too risky to allow that now. The combination and dosage of drugs has gotten much more complicated and of course they all alter his clarity to some degree. Additionally we need to make sure he is getting nutrition throughout the day.
As always I am thankful for everyone who shares kind thoughts of support and those who offer assistance of any kind. It proves how cherished JB is in your hearts and minds.
2 comments:
I have knit you to my bones.
You are in my eyelashes with the steam rising from my tea, in the space between my ribs as I stretch (painless!) my arms toward the ceiling.
Holding you close today, all these days ahead.
JSP, you are a strong and devoted partner. Sunday evening, while you were in the kitchen making adjustments to JB's feeding bag, he told a few of us how fortunate he felt to have you caring for him. He said "I'd be—well, I'd be dead without him."
Your loyalty and commitment are inspiring.
Post a Comment
Comments are appreciated.