Friday evening by the ocean at MBA
Dear Friends and Family,
I am sitting at the table in the motorhome which is parked adjacent to Jason and Jo's home which is about a 1/2 mile from the Pacific Ocean. If I listen carefully I can hear the breakers on the shore. The weather is perfect and Nan is sleeping soundly, has been for about an hour. We decided to drive down for the weekend after our Dr. appointment this morning. We had thought we might be at the hospital tomorrow getting a blood transfusion. However the blood work showed a hemoglobin of 8.9 which is border line for a transfusion but the Dr. gave Nan the choice and she decided to wait a few days. So we drove back home, Nan took a nap for awhile and I drove the Fiero down and picked up the motorhome from storage. After putting enough fuel in to cover this trip I drove home and packed it with food, medicine, medical devices, TPN, needles, tubes, blankets, pillows, towels, more food, computer and office files. When I went up to see Nan she was in terrible pain, she complained of her left nephrostomy. So I told her I would take a closer look, what I discovered made me ill. Background. The leg bags they send Nan home with from UCSF were terrible, poor quality, uncomfortable and unreliable. Nan found the number for her medical supply company and ordered out the right leg bags. I urged her to let me put on a better proper collection bag this morning on the left nephrostomy. I had already done so for the right one yesterday. That was at 8 am this morning. Then we loaded into the van, drove to Concord, saw the doctor and came back home and finally she went up to bed, all the time having worse and worse pain on her left side. What I discovered when I looked close was an extra white tab at the connection. Nan took one look and realized that when I pushed the fitting together I had not taken off the cap, she had gone 7 hours without any drainage from the left tube at all, totally plugged. When we removed the cap the kidney gushed out fluid and instantly her back pain began to improve. I felt so bad about missing the cap. I had never seen one before on the leg bag and did not expect one. But the pain had done its job on her, even with pain pills it took some time to get the pain behind her and fatigue set in.
Then she endured the rough freeway as we drove here. So she deserves her rest and sleep. What a courageous lady. She wanted to see Jason and Jo, its been a while since we got to see Jo, Jason was able to come up to UCSF and visit. When we arrived tonight Jo was here to welcome us and came and just hung out with us in the motorhome as I prepared the TPN. Jason was helping with a vesper service for the kids and came later. We hope Nikki, Steve and Keanna might be able to come visit tomorrow but realize it is a long ways to drive for a day trip, still we can hope.
Our visit with the Dr, oncologist was uneventful and not very helpful. We had to explain what had happened at UCSF since they have not communicated with each other. He was able to get a plan into motion to have a procreate type med for Nan which may help her put off so many transfusions, helps the body create red blood cells. Mostly the good news was that Nan's blood showed no infection, no spiking white cells, good balance of magnessium and other needed elements. So far this week we have had no fevers and in many ways it has been a very good week. Jan has totally spoiled Nan by giving her excellent foot massages. Now Nan hints at having her feet rubbed several times a day. Jan was such good help and great fun. We miss her terribly. Nan and I were talking and both of us had the same thought, it was like Jan was only with us 1 day, it all went by so fast.
We have the dogs with us on our trip and enough food to satisfy several hungry people. One must plan ahead.
As we reflect on God's blessings to us since last Friday night when Nan was released from the hospital we are indeed grateful. She has gotten to do many fun things, eaten lots of tasty foods, walked a lot, had good nights of sleep, is experiencing less leakage we think and enjoyed being home in her own bed with her own doggy, Starr and me. I guess you know which one is most important to her and does a better job of keeping her warm!
My prayer list this evening includes: Nan's recovery, stopping the leak, gaining strength and weight, resisting the return of GIST tumors. I long for Nan to have peace and to get rid of the 5th bag. This one has really gotten to her and I certainly understand that. The prayer list also includes reminding our clients to mail checks for the work we have finished. Its been a pretty dry week income wise and I know God is a great bill collector.
I want to thank Loree, our book keeper and my personal assistant for all the wonderful work she has done this week and Steve for his hard work and good appraisals. I am totally blessed with having these two wonderful helpers. New but much appreciated is Jean who writes reports for me. She has helped a great deal this week.
I'm signing off now, Nan is stirring and needs to have this keyboard go quiet. We send our love
tim and nan
I am sitting at the table in the motorhome which is parked adjacent to Jason and Jo's home which is about a 1/2 mile from the Pacific Ocean. If I listen carefully I can hear the breakers on the shore. The weather is perfect and Nan is sleeping soundly, has been for about an hour. We decided to drive down for the weekend after our Dr. appointment this morning. We had thought we might be at the hospital tomorrow getting a blood transfusion. However the blood work showed a hemoglobin of 8.9 which is border line for a transfusion but the Dr. gave Nan the choice and she decided to wait a few days. So we drove back home, Nan took a nap for awhile and I drove the Fiero down and picked up the motorhome from storage. After putting enough fuel in to cover this trip I drove home and packed it with food, medicine, medical devices, TPN, needles, tubes, blankets, pillows, towels, more food, computer and office files. When I went up to see Nan she was in terrible pain, she complained of her left nephrostomy. So I told her I would take a closer look, what I discovered made me ill. Background. The leg bags they send Nan home with from UCSF were terrible, poor quality, uncomfortable and unreliable. Nan found the number for her medical supply company and ordered out the right leg bags. I urged her to let me put on a better proper collection bag this morning on the left nephrostomy. I had already done so for the right one yesterday. That was at 8 am this morning. Then we loaded into the van, drove to Concord, saw the doctor and came back home and finally she went up to bed, all the time having worse and worse pain on her left side. What I discovered when I looked close was an extra white tab at the connection. Nan took one look and realized that when I pushed the fitting together I had not taken off the cap, she had gone 7 hours without any drainage from the left tube at all, totally plugged. When we removed the cap the kidney gushed out fluid and instantly her back pain began to improve. I felt so bad about missing the cap. I had never seen one before on the leg bag and did not expect one. But the pain had done its job on her, even with pain pills it took some time to get the pain behind her and fatigue set in.
Then she endured the rough freeway as we drove here. So she deserves her rest and sleep. What a courageous lady. She wanted to see Jason and Jo, its been a while since we got to see Jo, Jason was able to come up to UCSF and visit. When we arrived tonight Jo was here to welcome us and came and just hung out with us in the motorhome as I prepared the TPN. Jason was helping with a vesper service for the kids and came later. We hope Nikki, Steve and Keanna might be able to come visit tomorrow but realize it is a long ways to drive for a day trip, still we can hope.
Our visit with the Dr, oncologist was uneventful and not very helpful. We had to explain what had happened at UCSF since they have not communicated with each other. He was able to get a plan into motion to have a procreate type med for Nan which may help her put off so many transfusions, helps the body create red blood cells. Mostly the good news was that Nan's blood showed no infection, no spiking white cells, good balance of magnessium and other needed elements. So far this week we have had no fevers and in many ways it has been a very good week. Jan has totally spoiled Nan by giving her excellent foot massages. Now Nan hints at having her feet rubbed several times a day. Jan was such good help and great fun. We miss her terribly. Nan and I were talking and both of us had the same thought, it was like Jan was only with us 1 day, it all went by so fast.
We have the dogs with us on our trip and enough food to satisfy several hungry people. One must plan ahead.
As we reflect on God's blessings to us since last Friday night when Nan was released from the hospital we are indeed grateful. She has gotten to do many fun things, eaten lots of tasty foods, walked a lot, had good nights of sleep, is experiencing less leakage we think and enjoyed being home in her own bed with her own doggy, Starr and me. I guess you know which one is most important to her and does a better job of keeping her warm!
My prayer list this evening includes: Nan's recovery, stopping the leak, gaining strength and weight, resisting the return of GIST tumors. I long for Nan to have peace and to get rid of the 5th bag. This one has really gotten to her and I certainly understand that. The prayer list also includes reminding our clients to mail checks for the work we have finished. Its been a pretty dry week income wise and I know God is a great bill collector.
I want to thank Loree, our book keeper and my personal assistant for all the wonderful work she has done this week and Steve for his hard work and good appraisals. I am totally blessed with having these two wonderful helpers. New but much appreciated is Jean who writes reports for me. She has helped a great deal this week.
I'm signing off now, Nan is stirring and needs to have this keyboard go quiet. We send our love
tim and nan
2 Comments:
At 11:58 AM, Anonymous said…
Happy Sabbath to you! What could be better than spending time with your family and at the ocean too? I hope you are enjoying beautiful sunny weather. Even rainy days are pleasant as long as we are with the ones we love.
I am still confused as to what this 5th bag is all about? So you have 2 nephrostomy tubes, one urostomy tube and a colostomy. What is the other one attached to? It doesn't sound like there's much left to attach to. I'm sorry you didn't get any answers from the oncologist. He's probably still trying to unravel the mysteries of Nan's body. As we've said before ~ she's no text book case. She's special!
We're having a beautiful fall day here. The leaves are the prettiest in our own back yard this week end
Enjoy your time with family.
Love and Prayers ~ Carol
At 2:44 PM, Anonymous said…
I bet that Starr is in my seat! I can hear the ocean from here, and I bet it is cold, too. Hope you have a quiet and restful weekend with Jo & Jason. Wish I were with you. You sounded tired yesterday, and I guess you were. Life is never simple, is it? Know that I'm thinking of each of you and pray for you always.
Love, Sharon
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