Friday, a downturn develops....

Dear Family and Friends,
Well a day that was going fine sort of turned on us mid afternoon. Nan had been sitting in her recliner for several hours with the window open and cool breezes blowing in. Her vitals were taken and for the first time in a couple days I noticed a 99. However no one thought anything about it at the time. After she went back to bed she was shivering and asked for a blanket, that was a clue for me, shivering usually means the beginnings of a fever so I asked our nurse who happened to be a guy, he felt her forehead and said, no fever but to humor me he took it. 101.5 so the dr. was called, tylenol was given, peripheal blood work was ordered and here came atilla the hun, she drew Nan's blood the last time when she had a fever, not good at all, no feelings, no compassion, just poke and prod. She failed at the elbow, ruined the hand and ended up getting blood from Nan's foot, lovely. All of this caused Nan terrible pain so I held her foot and hand until she felt better. After the blood letting she fell asleep and I left for an appointment over in Fairfield for a purchase. When I got back 3 hours later the fever was still 101.5. This is unusal, fevers usually go down rapidly for nan after tylenol is given. So now I sit by her side, sleepy and ready to go home but reluctant to do so because they check on her so seldom and when her fever rises she does not always think clearly so I might sleep in the chair for a bit and go home later. Nan lost breakfast but enjoyed lunch and suffered through dinner, its amazing what can be done to food by a food service crew. I caught In N Out cheese sandwich while I was out. This evening we have rubbed Nan's feet, changed the bandage on her incision wound, helped her sit up in the recliner again for about an hour, changed a colostomy bag that had broken, read email messages, Nan always enjoys the comments to the blog, they really touch her and she smiles as she reads.
Now the nurse has come in at 10:30 to tell us the doctor says, if over 100 give her more tylenol, that is in spite of the fact that with Gleevec one is not supposed to take any. Now she has taken the temp and praise the Lord it is 99.4, heading downward. Perhaps our second time of sitting up in the chair helped. She has fallen asleep again instantly after hearing the good news. And with that news I will take my leave also and head home. I have become totally addicted to the hot chocolate that comes from a machine over in the ER. 1 dollar and it helps me get all the way home but it sure comes out hot at first.
We have heard from Bob and Carrol and they intend to visit tomorrow which is totally awesome to us. If anyone else would like to drop by the isolation ward call first, there was some thought of Nan going home tomorrow but I question that since we do not have the new formula of TPN at home, only last weeks formula which might be OK or not. So while I am home I'll copy the formula on one of the bags, bring it in so dr can see it and compare with what they are giving her now. They popped a new one tonight too, showed up with a huge set of potassium pills that had to come in on a trailer they were so huge but Nan gulped them down. Of course you then have to sit up for 30 minutes after taking those special pills.
What a week this has been, I've only been home for a few hours of daylight in the entire week, I usually get home about midnight and up at 7 or so, work at my desk for as short of time as I can to get the work done and then load the briefcase with the rest and head to the hospital. I find it very hard to be anywhere else when Nan is at risk. We are both grateful for the kindness of the doctors and most of the nurses, especially Anita our picc line lady and lilly the wound care nurse. We are thankfull for the phone calls, for the cards and especially for a card from my sister who touched our lives with some green that I know she could not really spare. Thank you Sibyl for your cards and help.
I have spent hours talking to Pam and Art this week. Art and Connie are so kind and always have the time to listen or encourage. I appreciate them so much. Nikki has been a great inspiration this week with her visit and many phone calls. The first thing Nan says when I get her is, Nikki called, Sharon called, Dana called, Mary called, Pam called. When you pick up the phone and call Nan you are investing in her recovery, expressing your love with your time and energy. I thank you all.
Wes, we love your comments and you bring chuckles into our days, please don't stop and know you are helping.
I usually spend an hour or so after waking talking to God and thinking over things. This morning I woke with a strong impression that we should be doing something to slow the flow out of the colostomy, almost every day a doctor or nurse would comment, no matter what we put in it comes out the colostomy as liquid. I thought, why not try Imodium so I talked to Nan when I got here and then Terri Hall, our beloved nurse arrived for a brief visit. She told me of a high power medical drug that is available to do just that, slow the flow. When the doctor came in mid day I asked him about it. He said, lets start gentle with Imodium and ordered it to be given. If we could slow the huge amount of liquid loss then Nan could hold on to her many neccessary minerals and enzymes better. So we hope it helps.
Please pray for Nan yet once again. This sweet courageous lady is holding onto hope. She and the doctor were discussing the cruise today and he has learned not to count nan out. He says we just have to get her bulked up and in top shape for the cruise. He was relieved that TPN will be allowed on the ship for the trip. He will help us get ready which is great!

So now its 11:18 and Nan's nurse just came in and talked a length about Nan's condition in general and was wondering if Nan took vit. c to help her system, we had a great discussion about things to do to strengthen her immune system. Nan is resting very comfortably now so I'm about to leave.

Sending love,

tim and nan