Post 646 Nan is weak, very tired but is holding on

Dear Family and Friends,
This evening we have Keanna visiting but we've hardly seen her. Dana too her after dinner for a shower and then a Princess movie before bedtime. Have not heard from either of them since. Nan has had a rough day with very low energy, relatively no fevers for the past 24 hours, many times of throwing up, sometimes mentally clear and sometimes not so clear. The wound care lady came today and replaced one of the perk u stays. We discovered a backed up bag last night and a very wet bed with fluids coming right through the skin by the tube instead of down the tube. At 2 am this morning when I discovered it I found and installed a new bag which drained perfectly and instantly. I put on a new gown and a thick towel under her to cover the wet spot. We woke at 7 and I gave her the next antibiotic in the series. Her vitals continue to be good but she is very weak and discouraged.
Pam came this morning to visit and encountered two detours, one at Tracy Blvd due to an injury accident on the levee road and then a second one since work is being done to a new overpass on Byron Highway. A 1 hour trip took 2 hours to complete. It was so good to see her again and she sat with nan for awhile just to be near. She arrived at the same time as the wound care nurse. After that Nan slept for awhile before we could coax her out of the bed so Dana could wash the sheets and get the bed all nice for her again.
Mary came this afternoon but Nan was mostly asleep during her visit. I've tried to do some work today but did not get as much done as I expected at all. We all really are touched when someone takes time from their family and busy schedules to come and sit with Nan. I know many of you simply cannot do that ever due to distance or your own intense schedules but we appreciate those that can come and have come to visit whether in Boston, SF, Concord, Antioch or our home.
One year ago we were making trips to UCSF in an attempt to solve the fistula. nan had several surgeries to occlude ureters, replace nephrostomies etc. Unfortunately the fistula continues to drain. This evening Marilyn called me over to look at the fistula. Deep in Nan's belly there is an area of soft pink tissue and at the side of the bottom of a little valley a small hole opens and if you push gently on the surface of nan's tummy you can see fluid being pushed into the opening. It is clean, does not look infected and no longer has the really strong aroma that it did for a few days. It has been changed three times today, I changed it at 7 this morning, then the wound care nurse did it again and Marilyn had to change it tonight because the wound nurse does not realize where it leaks out and had failed to do a tight job. She brings supplies we need and we are very grateful to her for her help.
We had thought that the lab might report something growing from the Tuesday morning blood cultures but we heard nothing today. We are continuing to administer the antibiotic every 48 hours as instructed but Nan gives every sign that she still has some effects from the blood infection. It took several days for her head to clear in the hospital last time and its been a week now since we started antibiotics so we hope to see improvements soon.
AT this point at 10:50 she is resting but not yet in a deep sleep. She wakes sometimes during the night and is confused, can't locate her water bottle or flashlight so calls to me and I climb out from my warm blanket into the very cool room to help her. Last night it was about 4 times during the night and we helped her back to sleep each time.
This evening she got to talk to Sharon and Aunt Ann, both of whom she dearly loves. Aunt Ann and Uncle Jim are visiting Sharon in the valley having driven there this week. I was so glad Nan happened to be awake and alert enough to talk to them.
Marilyn is taking a R&R trip to see Barb and Gerry tomorrow in Lincoln and can recharge her emotional batteries a bit. Dana and I will be with nan and you all are welcome too, Dana even has some pieces of pie left for you.
A bit of philosophy, I have found that as a caregiver I adjust to new realities. A year and a half ago I was being introduced to TPN and was learning how to prepare the bag each evening. I thought it would only be for a short time and it seemed just unbelievably complicated, now it is the accepted norm. A year ago Nan was walking to the car to go places only using the wheel chair for longer distances. Now she cannot stand on her own, I hold her in my arms, close to my chest and simply will not let her fall. I have to ask her to stand up and she can for moments and then turns and sits down again. That is the new reality. A year ago she was eating food several times a day but then the blockage set in, we eventually got the pump and now our new reality is Nan never eats a bit of food, not for months. She only drinks water and does that a lot to help keep hydrated. 3 years ago Nan was buying groceries, flying places by herself and was in charge of Nan in every way, now she has to ask us to do everything, that reality is very hard for her to accept. She has never wanted to depend on anyone for anything. It has been over 2 years since Nan has been able to be in a shower and 3 years since she has been able to sit in the hot tub and relax. Nan has adjusted to all these loses without complaint but I know it has taken its toll on the person she wants to be. What a precious dedicated lady to stay the course in spite of her current reality.
Oh that God would hear our pleas, give her strength again, give her peace and comfort.
We are thankful that the Sabbath has come, for us now it means nan does not have to share me with appraisal work for a day, that we can be together much more than on other days.
How is your reality today? Are there things you want to accomplish now while you can walk, talk, work, play? How much are you prepared to lose before you want to cash it in? What kind of life are you living? Survival, mountain climbing, mud wrestling, running in place, sleep walking, retreating? Nan has lost the many opportunities she cherished but you have not, are there dreams that need pursuing? Relationships that need mending? Behaviours that disappoint you but you can't move on?
We thank you for being a part of our lives and I'm amazed at I keep discovering more and more people that say, they read the blog every morning faithfully. You may not be able to do anything to help Nan. Even Dana, Marilyn and myself feel very helpless as we watch Nan weaken and there is nothing more we can do. We do a great job of covering the basics for her but we can't reach inside and solve what is making her weaker and weaker now. There may be nothing you can do to help Nan but God might be placing someone or something in your path where you can be of great help. Will you step up to the plate, take the pitch and knock it out of the park or will you just stand and strike out? I encourage you to stretch yourself.
Just now Nan called to me and I've spent the last few minutes with her. In the quiet of the late evening with pale light she asked for Adavan and asked if she had taken her pills today. I assured her she had taken everything she needed, including hydration, antibiotic, pills, drinking water etc. She told me she was warm enough in spite of the room being in the mid 60s and heading cooler during the night, she only has a flannel sheet covering her. She has her little throw up bucket and in it she has her precious blue flashlight Dana bought for her, her bottle of spring water with the light weight bottle and her tissues, her remotes for the room lights and to control her bed. During the night she will lose the cap to the water bottle, take the batteries out of the flashlight perhaps and turn the room lights on with the remote or non of the before mentioned things. All depends.
We send our love tonight and really appreciate hearing from all of you that responded to the blog, nice to hear from Troy and Aunt Ann too. Imagine, responding to the blog using your cell phone, what next!
love

tim and nan and marilyn and dana and our little princess keanna