Nan is resting quietly this evening
Dear Family and Friends,
Nan is quietly sleeping now as a second unit of blood flows slowly into her body. She has just had both Dilautid and Adavan to help her get needed rest. She is sleeping deeply and her breathing is rather rapid. A couple hours ago whe spiked a fever of over 102 but after some Motrim and time passing it is nearly normal again. We have Heather tonight as her nurse. Heather has been with us often over the past year and often asks to be Nan's nurse. She goes well beyond basic nursing care and this morning started the ball rolling for Nan to get a little more Dilautid for better pain control. Now Nan can have 6 to 8 mg of Dilautid every 2 to 4 hours as needed giving the nursing staff more latitude in helping her with the pain.
Today Dr. Ganey arrived at 11:30 as he said he would so we could consult. I had stayed put in the room so I could get to talk with him. He assessed Nan's condition with an obvious first line of attack on the infections she is battling, then we will be trying the new drug Nexavar after a couple day washout period between AMN and the new drug. He calls the tumors that have grown lethal and says they are the biggest obstacle to her getting better. I asked for a wound care nurse to assess the fistula and change the bandage and while I was out this afternoon that did happen. We have yet to see the kidney team which is very unusual since they are usually through our room every day. Today's creatins were down to 2.8 from yesterdays 3.3 which was a very positive direction. The internist added a slight amount of fluids since she thinks Nan may be getting a bit too dry. A determination was also made to have a new transfusion and that is taking place now. A steady stream of antibiotics is continually flowing into Nan and one only hopes they will do their job on her bugs. Interesting that the MRSA staph has been in the news so much today and Nan has tested for MRSA ever since Boston, the primary positive benefit is you get a private room, saved us about $5,000 in Boston since if you want a private room there you have to pay in cash for is on the spot but with MRSA you are assigned a private room automatically. This time they found MRSA in Nan's urine and nephrostomies. I am not clear on the exact infection Nan has in her blood but I'm told its a type of staph. At this point it still has Nan very confused and limited in her ability to solve problems.
When I had to leave for home and some work this afternoon she looked up, opened her baby blues and said, please don't go, wow that made me rethink my trip but I still had to go. 3 days in a shirt was enough already. Soxs were no longer white. So home to take a shower, play with the lonely doggies, do some computer work, forward even more work to the hospital laptop and then head back to the hospital.
I found Nan shivering under a sheet and I added a blanket knowing that her temperature was headed upward, sure enough, 2 hours later it was 102+. Then the Motrin and then it started downward again.
Mary came this evening as promised and after spending some time with Nan we headed over to Spaghetti Factory for some very good pasta. She and I got to just remember so many wonderful times with Nan and it was good to reflect on the positive influences Nan has made on both of us. Then I came back to the hospital and now I'm getting ready for bed when I finish this epistle.
Nan is holding her own vitals wise, is continuing to have extreme pain, still has infection in her body and we can hope for better things tomorrow. We received great news this afternoon that Marilyn has managed to come either Sat. evening or Sunday. Sharon is still planning on coming as soon as she can but her life could not be more complicated than it is right now. Pam will spend some quality weekend time with us and we look forward to seeing Shawn and Donna Want on Friday. I received a very nice email from someone in Africa today regarding his care for his wife who had GIST. A very thoughtful message.
This evening is one in which once again I reflect on the day and our situation. It is very fragile right now. I still believe that God can get Nan through this but I am also aware how serious her condition is at the present time. I am asking God to do what He knows is best for Nan. I know what I want, one more miracle and a return to a quality life for Nan.
Please pray for Nan, for Rogers brother and for other GISTers who are facing tough decisions and health challenges.
love
tim and nan
Nan is quietly sleeping now as a second unit of blood flows slowly into her body. She has just had both Dilautid and Adavan to help her get needed rest. She is sleeping deeply and her breathing is rather rapid. A couple hours ago whe spiked a fever of over 102 but after some Motrim and time passing it is nearly normal again. We have Heather tonight as her nurse. Heather has been with us often over the past year and often asks to be Nan's nurse. She goes well beyond basic nursing care and this morning started the ball rolling for Nan to get a little more Dilautid for better pain control. Now Nan can have 6 to 8 mg of Dilautid every 2 to 4 hours as needed giving the nursing staff more latitude in helping her with the pain.
Today Dr. Ganey arrived at 11:30 as he said he would so we could consult. I had stayed put in the room so I could get to talk with him. He assessed Nan's condition with an obvious first line of attack on the infections she is battling, then we will be trying the new drug Nexavar after a couple day washout period between AMN and the new drug. He calls the tumors that have grown lethal and says they are the biggest obstacle to her getting better. I asked for a wound care nurse to assess the fistula and change the bandage and while I was out this afternoon that did happen. We have yet to see the kidney team which is very unusual since they are usually through our room every day. Today's creatins were down to 2.8 from yesterdays 3.3 which was a very positive direction. The internist added a slight amount of fluids since she thinks Nan may be getting a bit too dry. A determination was also made to have a new transfusion and that is taking place now. A steady stream of antibiotics is continually flowing into Nan and one only hopes they will do their job on her bugs. Interesting that the MRSA staph has been in the news so much today and Nan has tested for MRSA ever since Boston, the primary positive benefit is you get a private room, saved us about $5,000 in Boston since if you want a private room there you have to pay in cash for is on the spot but with MRSA you are assigned a private room automatically. This time they found MRSA in Nan's urine and nephrostomies. I am not clear on the exact infection Nan has in her blood but I'm told its a type of staph. At this point it still has Nan very confused and limited in her ability to solve problems.
When I had to leave for home and some work this afternoon she looked up, opened her baby blues and said, please don't go, wow that made me rethink my trip but I still had to go. 3 days in a shirt was enough already. Soxs were no longer white. So home to take a shower, play with the lonely doggies, do some computer work, forward even more work to the hospital laptop and then head back to the hospital.
I found Nan shivering under a sheet and I added a blanket knowing that her temperature was headed upward, sure enough, 2 hours later it was 102+. Then the Motrin and then it started downward again.
Mary came this evening as promised and after spending some time with Nan we headed over to Spaghetti Factory for some very good pasta. She and I got to just remember so many wonderful times with Nan and it was good to reflect on the positive influences Nan has made on both of us. Then I came back to the hospital and now I'm getting ready for bed when I finish this epistle.
Nan is holding her own vitals wise, is continuing to have extreme pain, still has infection in her body and we can hope for better things tomorrow. We received great news this afternoon that Marilyn has managed to come either Sat. evening or Sunday. Sharon is still planning on coming as soon as she can but her life could not be more complicated than it is right now. Pam will spend some quality weekend time with us and we look forward to seeing Shawn and Donna Want on Friday. I received a very nice email from someone in Africa today regarding his care for his wife who had GIST. A very thoughtful message.
This evening is one in which once again I reflect on the day and our situation. It is very fragile right now. I still believe that God can get Nan through this but I am also aware how serious her condition is at the present time. I am asking God to do what He knows is best for Nan. I know what I want, one more miracle and a return to a quality life for Nan.
Please pray for Nan, for Rogers brother and for other GISTers who are facing tough decisions and health challenges.
love
tim and nan
posted by Tim Mustard @ 10:20 PM
4 Comments:
At 11:13 PM,
Anonymous said…
Tim,
Another first to add to your many heroic accomplishments. Yes the development of the bullet proof shirt. I had a pair of pants like that once, I just stood them up in the corner in the evening.
Be careful in the shower! You know that you have episodes in there so be careful.
Fashion Alert!!!! Fashion Alert!!!! Tim has been spotted wearing white socks! Can you believe it. What are you thinking? This is not professional attire and must stop immediately!
What color did they turn when they were not white any more? GREEN maybe. Come on you do walk around in people's yards don't you?
We are praying that Heather and the other staff can keep Nan comfortable until the Nexavar takes over are a miricle happens. Which ever comes first!
Wes
At 9:38 AM,
Anonymous said…
Hi Tim & Nan,
It looks like You have a full compliment of friends arriving for the next few days. Marilyn will be a lift to Nan's spirits I'm sure. How We do hope and ernestly Pray that Nan will turn the corner on these infections and began to feel better again.
We have run into a slight snag in Our plans for today but would still be able to come over later if You feel that We could be of some help to You this afternoon. Just give Us a call on My Cell (209) 484 5561 .
I think that You, Tim, should change Your Job discription to DR. Tim Mustard ! I think You could pass the tests to get into Medical School with no trouble at all.
We are thinking of Roger & His Brothers as they face a medical crisis, so Many of Us need the Lord's Healing & Care.
Gog bless you today and know that so many of Us are Praying for You both to be held safe in the Lord's Loving Arms.
Bob & Carrol.
At 1:39 PM,
Anonymous said…
Hi Tim and Nan, I sure miss you all, and you are always in my thoughts and prayers. Nan H
At 3:53 PM,
Anonymous said…
Good evening!
I'm finally getting smart! I'm sending the laundry out from the week end. I'm tired of being buried under piles of sheets, towels, etc. Why not let the academy kids wash and fold. They need the work and I need to have the job done. There will be approximately 30 sheets and I have no idea how many towels from the week end. Then there are the sheets from yesterday's move outs. I just can't face them. I think I have enough to make up everything clean again.
Roger and his other brother are on their way home. It was a very special time for the 3 brothers to be together. They prayed together, reminisced together, talked and cried together. Don says he is right with God and is ready to go. What more could we ask than to be at peace with our Lord and let him go to sleep in the arms of Jesus. "No tears, no death, no sorrow, no pain for God Himself shall be with you......"
We keep you close in our thought and prayer during his very difficult time for you and Nan. I know how she hates to be in the hospital! Yet, you have more rest knowing she is being cared for ~ most of the time. You do have to keep an eye on them though. You do such a good job being an advocate for her and keeping her medical staff in line.
Love and Prayers ~ Carol
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