Home again

Dear Family and Friends, Fellow Gisters and others,
We are home again. Nan is resting in her rented hospital bed in the family room after a quiet relaxing evening. When we got home Dana had proceeded us by hours which I will explain later and had some nachos and cheese ready. While Nan walked in from the car it was with a great deal of effort. Once again the good doctors have managed to add many pounds of fluid to her tissues. We don't know how much yet but it can be seen in her right thigh, both feet and upper body. We had just got back to normal body weight when this most recent stay at the hospital required large amount of fluid due to her blood having some Staph infection and also her kidneys. We both urged caution regarding fluids but we were pretty much not heard and the doctors said, anything we put on we can take off, well they put it on but didn't stop to take it off so we will start on lasix in the morning, a bit at a time, not too fast or we push the creatines up again. Nan is very weak and says she hurts all over with several spots showing what looks like bruising. Perhaps its the Sprycel reaction.
The process of leaving a hospital always seems to take hours and today was no exception. As I drove from Tracy where I had seen a house I spoke several times on the phone with Nan and others and being released was already in the works then. I first went to the doctors office because Dr. Kinkapati wanted to give me prescriptions for Nan. When I spoke to the pharmacist at Critical Care I told her we liked liquid dialautid best but Longs could no longer get it. She said to try other places so I started calling as I drove. Walgreens in Brentwood did not have it but said they thought Antioch had a bottle so I called them and yes they had one bottle so then I called the doctors office and told them we had found a bottle and would they write the prescription so I could get it. Dr. K wrote all the prescriptions we needed, a bottle of dilautid, a bottle of oxycontin 40 mg and another of 20 mg since Nan is now taking 60 in the morning and 60 in the evening to manage the increased pain due to tumor growth.
As we were preparing to leave the hospital finally and the nurse was flushing the picc line the one they had repaired came loose again. For awhile it looked like Nan would have to stay the night but they called someone over from Intensive Care who was knowledgable and repaired the line again but of course by then it was nearly 7 pm. We had to stop and get a coke icee and then find the drug store in Antioch and then wait while they prepared everything and then find a credit card that had space for the charges. So we did not get home very early. Moving in and out of the car is very difficult for Nan but she did it with no small amount of pain. She got up the steps from the garage to the house and to her chair where she resided for awhile. Then to the bed to settle in. At 8:30 on the dot she remembered Sprycel and took her 3rd pill. I got busy and prepared the TPN, some adavan for pain and then settled down for some nice time with Dana and Nan. Then Dana headed to bed, she is tired having been with nan all day long.
I think I will bring my breathing machine down here tonight and sleep in the chair so I can be near to Nan. She didn't want to make the trip up this evening being so tired and sore. The hospital has responded to her needs and are sending physical therapy out to our house to work with her to get her back on her feet again, also someone to give her a bath and help her along with the wound care nurse and our regular Terry who takes blood and directs me in preparing antibiotics, TPN and such.

The increased tumor growth has really caused lots of additional pain which hits hard and then gets better. Sometimes she can manage it by just moving about but other times it is just to intense.

This evening we were happy to hear from both Nikki and Jason. Unfortunately when Jason called I was in the process of moving mom from her chair to the bed and we hardly got a chance to talk. Nikki called and we decided to got to Sabbath School tomorrow with Keanna. Bob and Carrol are feeling well enough to come for a short visit. nan can only handle short times of being awake now and then drifts back to sleep although each day she seems to be more alert again.

Right now I can hear a medivac helicopter over head here to pick up someone that is ill or been hurt. Anything medical really gets my attention now since we have been through so much. The helicopter seems to be circling our area and is really loud.

We are all relieved to have Nan home again and hope she can enjoy some quality time with Dana in the next few days since Dana flys home on the 4th to have her other hand done. We have certainly appreciated Dana being here and helping so much with Nan's care. There is noone in the world like Dana and she takes care of so much.

Well once again it is time to rest. I enjoyed the many messages to the blog today and it was great to hear from fellow GISTers as well. We read every word and appreciate the time and effort it takes to log in a message.

If anyone is interested in sponsoring a pill or two they are about $80 a piece which means $160 a day. You can give to Nan's recovery fund through the Tracy SDA Church and can count it as a donation. I can supply the address of the church in a future blog. Somehow we have to keep Nan on the medication until we get the AMN from Novartis on compassionate basis. We hope and pray that the Sprycel will have an effect on the tumor growth. We should know soon.

Please keep our brave Nan in your prayers, she needs strength, courage, healing, faith and hope.

love

tim and nan and dana