Less than ideal day, pain blurred the joy
Dear Family and Friends,
As I write this evening I have an image of the tumor or what we think is tumor beside the fistula. It seems to grow larger every day and it causes me great concern and fear. It is a visible reminder how much we need to get the AMN drug to try as soon as we can. We will see the doctor tomorrow morning at 11 and try to build a fire under him to facilitate getting things submitted. Travis has emailed him the contacts at Novartis, lets hope he has made contact.
Delores, the wound care nurse, came today and changed dressings / keepers on both nephrostomy tubes, the right one began to hurt more and more until Nan could not take it so called her up and she was kind enough to come back tonight and redo the dressing and the pain subsided. Nan never made it downstairs today but was busy working the phones getting the correct lovenox ordered, taking care of other medical issues and spent a couple hours talking with Terry today who came by to change a valve that should have been replaced at the hospital after the blood transfusion but was not. Nan got very poor attention and care in short stay this time, unusual as they are usually so good. At one point a leak developed and blood was pooling on the floor, marilyn went to find a nurse who told her that was not possible, that is until she saw the pool of blood and cleaned it up and fixed the leaking tube. Marilyn was not impressed with the nursing attention Nan received.
I opened a bill from Mt Diablo Hospital tonight, I thought it was for $175 but noticed more numbers, looked closer and the bill was for $175,000 for the last stay in the hospital after the cruise. That was for 10 days. And mind you I did a whole lot of the nursing care since I was with her almost all the time day and night. You should see my bill!
We have Nan all set and sleeping now. She has not slept during the day for the past three days but sleeps well at night, the full night. However she is a might bit cranky just as she is going to sleep in the evening and of course it takes Starr a bit to settle down as well.
Nan is stronger now and once again today the colostomy bag put out quite a bit. At this point what is coming out is very strong , enough to gag Nan if we don't have room fresheners ready and a stiff cross breeze.
I am so thankful to Marilyn who has been an angel to Nan in every way, she cares for her gently and talks, listens and rubs her back. She is good medicine for Nan and I believe Nan is stronger for it making great strides this week. Marilyn goes home next Wednesday and today we heard that Barb and Gerry can come on Tuesday to spend the day. We all know each other from the Sacramento Central SDA Church from long ago and Marilyn will enjoy seeing Barb and Gerry.
Tomorrow night we get Keanna for a sleep over and then I'll take her to Sabbath School on Saturday. It is my intention to get the Christian Dish up so Nan can enjoy some really inspiration programing, just have not found time to do it so far. Its sits and waits for a few hours of installation by me.
Today I drove to Santa Rosa, about 2 hours plus a little. On the way Alice called. Alice is the person that ordered the appraisal I was going to see. She said there were three more I could see while I was there also so I ended up seeing 4 at the Centreville development and then I also did a review of a ranchette north of Santa Rosa out in the sticks. No AC in the Fiero but it was a good day overall, got home about 8 pm tonight, bone tired as you can imagine. Art helped talk me home, what a great friend he is and always has been. The sales lady at the project was helpful and kind and had the information I needed ready for me when I arrived. Interesting what little condos and townhouses sell for now, over $400,000.
Tomorrow morning I need to be in Tracy at 7 at the VW dealer to get the two parts needed for the bug so the AC can finally be repaired. Its now been over a week and I miss my little bug. however I have enjoyed driving the Fiero and feel even better about selling it now, knowing that it runs great, gets about 24 mpg and is in good shape. So Craigs list or ebay here we come.
Please keep praying about the blockage, the tumor grown and about God's big picture for Nan. These are very tough days for her with pains popping up here and there, no food in over 4 weeks, stomach pumping required every few hours. Its a rough way to live. Tomorrow I intend to ask the doctor about what can be done to locate the blockage, what we can do about the tumor growth and how soon can we apply for the AMN drug!
I was so thankful to get home tonight after a very long, hot and tiring day, it felt so good to drive into our own driveway and be home safe. Home is where Nan is!
love
tim and nan and marilyn
As I write this evening I have an image of the tumor or what we think is tumor beside the fistula. It seems to grow larger every day and it causes me great concern and fear. It is a visible reminder how much we need to get the AMN drug to try as soon as we can. We will see the doctor tomorrow morning at 11 and try to build a fire under him to facilitate getting things submitted. Travis has emailed him the contacts at Novartis, lets hope he has made contact.
Delores, the wound care nurse, came today and changed dressings / keepers on both nephrostomy tubes, the right one began to hurt more and more until Nan could not take it so called her up and she was kind enough to come back tonight and redo the dressing and the pain subsided. Nan never made it downstairs today but was busy working the phones getting the correct lovenox ordered, taking care of other medical issues and spent a couple hours talking with Terry today who came by to change a valve that should have been replaced at the hospital after the blood transfusion but was not. Nan got very poor attention and care in short stay this time, unusual as they are usually so good. At one point a leak developed and blood was pooling on the floor, marilyn went to find a nurse who told her that was not possible, that is until she saw the pool of blood and cleaned it up and fixed the leaking tube. Marilyn was not impressed with the nursing attention Nan received.
I opened a bill from Mt Diablo Hospital tonight, I thought it was for $175 but noticed more numbers, looked closer and the bill was for $175,000 for the last stay in the hospital after the cruise. That was for 10 days. And mind you I did a whole lot of the nursing care since I was with her almost all the time day and night. You should see my bill!
We have Nan all set and sleeping now. She has not slept during the day for the past three days but sleeps well at night, the full night. However she is a might bit cranky just as she is going to sleep in the evening and of course it takes Starr a bit to settle down as well.
Nan is stronger now and once again today the colostomy bag put out quite a bit. At this point what is coming out is very strong , enough to gag Nan if we don't have room fresheners ready and a stiff cross breeze.
I am so thankful to Marilyn who has been an angel to Nan in every way, she cares for her gently and talks, listens and rubs her back. She is good medicine for Nan and I believe Nan is stronger for it making great strides this week. Marilyn goes home next Wednesday and today we heard that Barb and Gerry can come on Tuesday to spend the day. We all know each other from the Sacramento Central SDA Church from long ago and Marilyn will enjoy seeing Barb and Gerry.
Tomorrow night we get Keanna for a sleep over and then I'll take her to Sabbath School on Saturday. It is my intention to get the Christian Dish up so Nan can enjoy some really inspiration programing, just have not found time to do it so far. Its sits and waits for a few hours of installation by me.
Today I drove to Santa Rosa, about 2 hours plus a little. On the way Alice called. Alice is the person that ordered the appraisal I was going to see. She said there were three more I could see while I was there also so I ended up seeing 4 at the Centreville development and then I also did a review of a ranchette north of Santa Rosa out in the sticks. No AC in the Fiero but it was a good day overall, got home about 8 pm tonight, bone tired as you can imagine. Art helped talk me home, what a great friend he is and always has been. The sales lady at the project was helpful and kind and had the information I needed ready for me when I arrived. Interesting what little condos and townhouses sell for now, over $400,000.
Tomorrow morning I need to be in Tracy at 7 at the VW dealer to get the two parts needed for the bug so the AC can finally be repaired. Its now been over a week and I miss my little bug. however I have enjoyed driving the Fiero and feel even better about selling it now, knowing that it runs great, gets about 24 mpg and is in good shape. So Craigs list or ebay here we come.
Please keep praying about the blockage, the tumor grown and about God's big picture for Nan. These are very tough days for her with pains popping up here and there, no food in over 4 weeks, stomach pumping required every few hours. Its a rough way to live. Tomorrow I intend to ask the doctor about what can be done to locate the blockage, what we can do about the tumor growth and how soon can we apply for the AMN drug!
I was so thankful to get home tonight after a very long, hot and tiring day, it felt so good to drive into our own driveway and be home safe. Home is where Nan is!
love
tim and nan and marilyn
posted by Tim Mustard @ 10:42 PM
3 Comments:
At 5:31 AM,
Anonymous said…
Nan and Tim,
Good Morning, may God be with you each step as you go through all of the pain and trials.
You are in my thoughts!
Sue M
At 9:18 AM,
Anonymous said…
Hi Tim & Nan,
Sounds like You have a full weekend ahead with friends and family, S.S. etc. Here's hoping that things go well for all of You.
The New Med needs to be in place soon,the Dr. must be aware of that but sometimes the wheels move so slowly.
We saw the Movie "Waitress" yesterday in Stockton, My review "Not Bad" I would have writen a different ending but I'm no writer! Just a "Watcher". We left the Theatre "Hungry". The Movie is about a "Pie" Place and they sure made a lot of Pies that really looked good.
We then went to Marie Calendars and picked up a Pie. $5.99 each for the month of June, they do make good pies.
I thought Your Fiero had AC? or does it no longer work? Some one must need that little "Red Bomb" more than you do.
That bill from Mt.Diablo Hospital is outrages,does the trip Ins cover that or is it left up to Your Blue Cross?
We will continue to Pray for Nan's Healing and comfort, She has gone through so much in the last Year, What a Strong Lady She is.
Much Love To you,
Bob & Carrol.
At 5:06 PM,
Anonymous said…
Praise the Lord we got rain!!! We had a wonderful downpour this afternoon complete with booming thunder and lightening. Of course Roger had to regrade the roads, but he's not complaining! Now for some more to come.
I doesn't sound like Nan got out to get her hair done. Sorry. I know how much fresly washed and styled hair can do for a woman. Maybe next week...
Our prayer for you both is for peace of mind, comfort for Nan, relief from that growing tummor and a restful week end. We leave you both in God's hands and ask that His will be done. We mortals just don't have the wisdom to know what is best for us. We can but trust.
Love and prayers ~ Carol
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