I LOVE MY BED

Hello everyone,

I'm sorry we haven't posted sooner but the last few days have been a whirlwind. We did not get discharged from HUP until 11pm Monday evening. While my dad and I remained calm, mom was quite upset about this, as the hold up was two bags of blood that were ordered at 9am that day. The blood took FOREVER and we kept nagging whoever we could find to get things moving. As the day wore on, mom began to feel sick and achy (they quit giving her meds as they anticipated a discharge sooner than it ended up happening) and mom began to worry about coming home. She feared she may be coming down with a fever, but things held steady and we were able to wheel mom outta there with our trusty tank of oxygen close by.

Tuesday we had visits from the praxair man to set up our own compressor tank for oxygen, and from UPS who delivered some extra nupogen (sp?). Our sweet visiting nurse Kathy came by to go over the discharge instructions and change mom's dressings (in addition to the Hickman, there is a dressing and tube that need daily flushing for mom's gall bladder). Mom was discharged on fifteen different prescription medications which need to be taken at different times throughout the day. She remains on the Fentinol patches (150mcg/hr), Valium, and Dilaudid (prn now) to control her unbelievable back pain.

Wednesday we had to return to HUP for labs. Luckily mom slept in the car as it was a long ride down (1.5 hours). Once we got up to the clinic, they did not have mom's chart or orders handy so mom was parked in the hallway in her wheelchair. Looking at mom, they knew she needed a bed to rest in while we were waiting. Mom did indeed need platelets, so we ended up staying in the clinic from about 1030-300 yesterday. Mom slept through most of the visit, and I bummed around the hospital a bit looking for snacks mom might like to try. We got some great news yesterday - I actually responded to the NP with a WHAT?!?!?!? Mom's WBC has rebounded to 3.5 and her ANC is around 3000. There is no sign of the donor in mom's marrow, however, so we believe this is entirely mom's immune system. She is considered to be in remission.

Mom is VERY tired - we attribute this partially to the narcotics she is on and also the gross sleep deprivation she's encountered over these last nine weeks. She gets discouraged with how weak she is, but she is getting a little stronger each day. Mom is awake about six hours total throughout the day, the rest of the time she is in bed sleeping. She is in a lot of pain from her back - and needs to have an MRI - so too much movement sets the spasms off again. It is a delicate balance between rest and movement as too much rest is not great either. The doctor suggested starting with one trip up and down the stairs a day and a walk out to the mailbox. We've been able to do a walk out to the end of the property and two or three trips on the stairs each day.

We've been forcing mom to eat whatever sounds good to her - which is not much. Typically even after she requests something once she sees it she becomes nauseous again. Mom is very restricted with what is allowed to eat in her post-allogenic transplant diet. No leftovers, no take-out, no raw fruits or veggies, and no bakery items. We're aiming for just 1000 calories a day and I think we're making that. Mom needed to loose a lot of water weight and she has lost about 10 pounds now since Monday. Her feet are still two sizes bigger than normal, but I have seen some signs of ankles this morning! I imagine as she continues to move around she will lose a great deal more and she may begin to feel more comfortable eating. She's just been so full for so long.

Mom really has not been up for talking yet. She and I can't seem to finish even a brief conversation as she does not have the energy. I know this will get better with time. Please do not panic if you have called and have gotten the machine. Everything is OK, but it is going to take some time for mom to recover from the entire ordeal she has been through. Know that she's gotten your messages and will call you when she feels she can. She is so appreciative for everything you have all done to help her get home. I know you all want to help mom when you can, and believe me when I say that we will take you up on your generous offers. Every one of you are special to mom, and I know she looks forward to being able to visit with each of you very soon. My family and I cannot thank you enough for all of your love and support, for sharing your special talents, and for your prayers, cards, blogs, and calls. You all make up the most wonderful caring network and we are just so very grateful for that.

We love you all!