Blue Monday

Dear Friends and Family,

Nan is running a slight fever this evening and has not felt that well all day. For most of the day there was no fever but she has not felt very good. We did our hot tea thing this morning after an uneventful night with only 3 times up to empty bags. She had toast with peanut butter, jello for lunch and cold cereal for dinner, some ice water in between and more hot tea. We walked this morning down the street a ways in the cool temperatures. She handled that well. About 10:30 she went back up to bed and around 11:45 the visiting nurse for her incision wound arrived. She is a pleasant lady and really knows her stuff about wounds and healing. She will come three times this week and for her visit we have a co pay of $60. She liked the way we have been caring for the wound but wants to get more slumf out of the healing portion and she is not allowed by law to do that, takes a special person who is signed off in sluff removal. When the sluff is gone then the wound vac can be applied again. Right now there is some infection going on and she put in the ointment and suggested a different med to help which she will research and bring with her on Wednesday. She is also going to bring the locking devices which hold the nephrostomy tubes in place. She suggests they should be changed every week and the last time was back in Boston, few people know how to change them and even fewer bother to try.

Nan slept some more after the nurse was here and then came down this evening to her chair. The other visiting nurse came for blood draw and dressing of the PICC line around 8 this evening. While she was here she discovered that Nan had 99.4 and a higher heart rate than normal, about 120. So we will be taking her temperature this evening when ever she wakes. With TPN temps can move rapidly so we need to be very careful and attentive. All her systems appear to be working well and the urine has finally cleared, no more blood from the right kidney, the first time without blood since Boston, not sure what that means but its got to be better than losing blood all the time through ones kidney.

Tomorrow Dana arrives at around 10 am in Sacramento. I think we plan on Nan and I riding up to get her but we also have both Steve and Nate willing to go get her, not sure yet what the plan will be but we'd better decide soon.

Nate has started power washing our house today and applying caulk around the windows and doors. Loren Dunston got me thinking when he said he helped his brother paint his house up in Washington. Perhaps we can use some of our spare time and get our house ready for winter. It has been 19 years since we built it and the paint has done pretty well but the trim is really beginning to show neglect. I always just expected to have someone come and paint it but times and fortunes change. Funny, I put part of my way through high school and college by painting houses in the summer. I just happen to know how to paint, handy.

We are so glad that Dana is coming in, at this point we are not comfortable having Nan left alone at all. She cannot carry her TPN bag it is connected to her body 24 hours a day so for her to move to the bathroom or up and down the stairs on the stair chair she needs someone to help with the bag. Although she hates to depend on anyone at this point she has to. She was so glad to see Steve and Nate today and to hear from Nikki and Keanna and Mary and of course her soul mate Sharon. I've been doing a bit of bouncing back and forth, some time in the office working our finances, Yikes, and some time sitting with Nan or getting her things she needs or wants. I have the laptop sitting beside her chair now so she can once again communicate with the world when she feels up to it. She was noticing tonight that someone else who just started on Gleevec at 600 mg was having nausea, muscle and stomach cramping and other systems Nan is feeling, could explain part of what is happening.

Wanted to thank Steve, Loren and Emily and Mary for brining tomatos. I have been enjoying them for at least two meals a day, they taste wonderful and are just ripe. I have been enjoying the banana bread from Sylvia and Mary, the lasuana from Emily and the fruit salad from Mary. I am not going hungry for sure. Perhaps we can tempt Nan into another smoothie tomorrow, hope she feels better over all.

My prayer tonight is for all the pieces to begin to fit into place, we have solid nursing help, Dana for mental health and food ideas and general fun, I know how to prepare the tpn every day and assist with general hygene, we are keeping her hydrated OK this time I think. I long for the day when she is not in such pain in her back, incision, stomach and can start to enjoy her freedom to live.

We send our love and deepest gratitude. Irene, not sure if we can try to trip this weekend or not, we'll have to see as we get closer but thanks for keeping us posted.

Love to all,
tim and nan