Despite the best intentions, Jeff has not felt strong enough to write a new post so, again, I am doing the honors.
Yesterday, they increased Jeff's oxycontin (sp?) because he had doubled the dose of Dilaudid for break-through pain the day before. The doctor said that instead of continuing to up the break-through pain meds, he would increase the baseline meds to give Jeff more consistent and more effective pain control. Therefore, he should require less mediation for the breakthrough pain. The downside of upping his oxycontin is that it makes him extremely tired and groggy. The doctor said this should only last a couple of days while Jeff's body adjusts to the new "baseline."
So, visits were short yesterday because Jeff was too tired to participate. I took Regan to see him for a one-on-one visit and after about 15 minutes she came to find me in the playroom with Jack and Finn. I said, "are you done visiting already??" and she said, "yeah, because Dad fell asleep." Later when we got home, she told me that she was sad he fell asleep and that she didn't really get to visit with him because "it's just one more day that I don't get to be with him." I felt so sorry for her. But, overall, the kids continue to do well and talk openly and honestly about their concerns. Except for Finn--Finn continues to express his anxiety by being extremely clingy at bed time. He cried solid from 8:30 p.m. to 3:00 a.m. last night before finally giving into exhaustion. At first, he was consoled if I held him or laid with him. But after a while, even that didn't work. He flopped around on the bed, rearranging himself and his pillow and his baby octopus that he sleeps with. He was angry and uncomfortable and finally cried himself to sleep around 3:00 a.m. I felt like doing the same thing, but didn't have the energy or an octopus.
My friend Barbara is going to take one for the team tonight. She's going to spend the night at our house with the kids so that I can spend the night at the hospice with Jeff. (Colleen, you are going to get your turn too as soon as I get around to returning your phone call, so consider this fair warning! Ha!). Jeff has been very lonely at night and had repeatedly asked me to stay with him at the hospice, so I am happy that we have finally made arrangements to make it possible. Nightime is when we had our best conversations--after the kids were in bed and we could finally connect about the day's events. I don't think Jeff will have much energy for talking, but that won't stop me from yammering on about work (they have been wonderful to me!); Aubrey (she just found out she is one of the Captains of the Cheerleading Squad!); Regan (her coach took me aside to tell me that Regan is "AWESOME" at soccer and to thank us for putting her on the team); Jack (the informational meeting about Cub Scouts is tonight); and Finn (the naughty, naughty monkey who won't go to bed!).
I will also spend part of the evening reading your blog comments to him. (Jim--don't let me down. Jeff loves your stories and thought your bitter tirade about Hardee's was particularly uplifting!) Keep 'em coming. And if any of the rest of you have funny stories to tell--don't hold back. Now's the time to let 'em rip (George--behave.) Jeff has said several times that although he appreciates everyone's encouragement and positive thoughts, he especially loves the lighthearted comments that do nothing more than distract him and make him laugh.
In the meantime, I'll try to be better about posting updates, now that I know Jeff will likely have me be his scribe until he's more alert and energetic. Until then, take care as always.
And--thanks to everyone who has visited, brought us treats, fed us dinner, run errands for us, etc. Thanks also to the friends, family members, and even strangers who have provided a listening ear and unlicensed therapy to me and my kids! The list of names would be too long to print here, but each one of you has been an angel to us. Thank you, thank you, thank you. I can't say it enough!
Kelly et al.