Thanks for the prayers and concern

I think I have mentioned a few times that my husband is an amazing man, and he continues to be. The bleeding he experienced last Friday stopped and his right arm and leg have strengthened to where he is almost walking on his own. One of my concerns is that his feet have started to swell, but none of the doctors have given us a reason for it or seemed to be concerned. Also when the IV that administered the blood transfusions was removed from his left arm, he complained of numbness in his arm. Since then the hand has swollen and he has lost all strength in it. Again no one seemed concerned. We came home from the hospital on Monday afternoon and hospice was here waiting for us. We had an almost 2 hour visit with the nurse and she made us feel comfortable with the situation. Our insurance is Aetna, and they have a program called "Compassionate Care" that I knew nothing about until last Friday when a case management nurse called me. Under Aetna's program you can call in hospice and still seek aggressive treatment. This made us feel better about the whole situation. We have decided that we need hospice to help us with the pain management, as well as some personal care things like getting in and out of the shower. This week has been pretty rough though. The days are not so bad, but come night it gets crazy. Rickie's pain seems to increase tremendously in the evening. All of his pain is localized in one spot on his right shoulder blade and he says it feels like someone pushing really hard with an object right in that spot. During the evening he sits in his recliner watching TV, and is somewhat comfortable, but when it gets to be about midnight and I say lets go to bed then things take a turn. He gets up complaining of the pain and goes to another chair in the livingroom. He will sit there and fall asleep but this concerns me because he doesn't have his feet up. In about an hour he will get up from there complaining of the pain and move to another chair in the bedroom, or elsewhere in the house. This musical chairs has been going on for 4 nights, all night long. Thank goodness my daughters are here, as they have been a great help. We have upped his dilaudid dose, as hospice had advised, but last night he was up out of bed every 30 to 45 minutes, wanting his medication. He has also been on Ativan, and we have been advised to up the dosage on it as well. All of this moving around has not helped with his nighttime feedings and of course when he gets up and moves so do I. Needless to say none of us have gotten much sleep. Today was a good day, and we went to Lowe's to buy some plants for the garden. He drove around in a cart and did quite well. I am hoping that being out and around during the day will help him sleep tonight as well.
Any advice on the medication is greatly appreciated.
Thanks again for all the prayers. They have carried us along this latest road.
Cheryl
Wife of Rickie, dx Stage IV EC, Oct. 2010
Mets to bones and brain