Sabbath afternoon - hanging in there!
Dear Friends and Family,
Its Sabbath afternoon here in room 3123. Nan is heading for a nap and is feeling pretty well today. A bit of pain here and there but controlled by dilotud very well. She had breakfast, Cream of Wheat and then lunch, Split Pea Soup. She asked and received a second bowl of it, now that is a first for a very long time. Her TPN IV line spring a leak and poured all over the floor so they just took it away early. No seconds on TPN today!! I have the motorhome in the parking lot so went out and had a yummy bowl of soup that Marilyn sent in her super care shopping spree. That and good bread which she also sent. I can't stay out there very long though because every chair, every bed says Nan loudly so I hurry back in to be with her.
We were sort of hoping to see some company this afternoon, actually really hoping to have guests but so far that has not happened. We certainly understand, it is a beautiful day outside and there are lots of places to go and things to do. Yet we do hope to see someone, the hours get sort of long for Nan being in the bed 24 hours a day.
Dr. Patel, oncologist, visited this morning. He let us know that he and others in his practice are actively trying to find a bed for Nan at UCSF, Stanford or UC Davis. He says they won't stop searching until they find the correct team to help her with the leakage issues. That was reassuring to us. Dr. Ganey started calling Dr. Warren, Dr. Bertagnolli's friend last evening but so far no response. He is head of surgical oncology at UCSF and would know the right people to help Nan.
Our care continues to be very good this time and this private room is great. But Nan would much rather be at home in her own chair or bed relaxing. We have been so many places and in so many different circumstances that our sense of being is sort of mixed up. How we wish we could relax and just let healing take place as we move to recovery.
Amy, our wonderful ICU nurse at Brigham and Womens sent a message to the blog last evening or this morning. Amy, if you happen to see Dr. Bertagnolli we would appreciate your mentioning our situation. We are not sure if we are sending our emails to her to the correct address. We don't have her office phone number here with us at the hospital either. What we really need is once Erin is moved to the actual hospital that is going to attempt to repair the leak, we need the chance for the Dr who will end up doing the work to be able to talk for a few minutes with Dr. Bertagnolli, she knows how things are inside like no one else and I think that could help a lot. Even if she just brought Dr. Warren up to speed on the condition of the illelal loop and the uriters, that might help a great deal. Also Dr. Steele has inside knowledge and has already been emailing with our doctor here. We are trying to avoid coming back to Boston due to the very long trip involved, not sure how Erin could handle it at this time and what we would do about the constant drainage of the wound. Amy, it is so good to hear from you and remind your patients and caregivers how lucky they are to be in your care. We continue to be deeply grateful to Dr. Bertagnolli for the wonderful work she did. We are thankful to the max for her dedication. We are also very thankful for the ICU team and for Dr. Bs team of very good people. We will always remember our time there with great joy and appreciation.
Our son is at a youth rally in Fresno today and Nikki is deeply involved with a huge "yard" sale of sorts where thousands of items are sold. It started as a few parents with twins selling stuff to each other and it has grown to be a huge event now which Nikki helps with. Last time she made several hundreds of dollars above what she spent as she purchased other cute items for keanna. She has been working on Friday and today on the sale and will be very glad to come home tonight with it behind her. Since she helps with the sale she is allowed first access to the nice items, like a child in a candy store!! When we spoke on friday she was driving there in their Tahoe with stuff piled to the roofline of the SUV so she takes this really seriously and does great work there.
We hope to be able to see Nikki and Keanna tomorrow, that is something to look forward to for sure. Well I feel a walk coming on, time to stretch out the legs for a bit and go get a drink from the motorhome.
We are doing as well as one could expect here. Nan feels pretty good, is eating better than at any time in the past two weeks, is sleeping as well as you can in a hospital bed. I have lots of things going through my mind, taxes, scheduling, writeups, callbacks, paying bills, Nan's leak!!!!!
I keep trying to let God assume the load but it is sure an easy one to take back and worry over for awhile. Our lives are definitely day by day and sometimes hour by hour. Not easy to live this way but what are our choices? None so we keep on, holding on and treasuring calls and emails from friends and family. We love you all, it was so nice to have Barb and Gerry with us, it gave each of us someone to talk to about what ever was on our minds, serious or silly and it really was a good experience, one we will always treasure.
Sending our love, please continue to pray for God Healing of Nan's leaking problem. Also that His will be done in everything.
tim and nan
Its Sabbath afternoon here in room 3123. Nan is heading for a nap and is feeling pretty well today. A bit of pain here and there but controlled by dilotud very well. She had breakfast, Cream of Wheat and then lunch, Split Pea Soup. She asked and received a second bowl of it, now that is a first for a very long time. Her TPN IV line spring a leak and poured all over the floor so they just took it away early. No seconds on TPN today!! I have the motorhome in the parking lot so went out and had a yummy bowl of soup that Marilyn sent in her super care shopping spree. That and good bread which she also sent. I can't stay out there very long though because every chair, every bed says Nan loudly so I hurry back in to be with her.
We were sort of hoping to see some company this afternoon, actually really hoping to have guests but so far that has not happened. We certainly understand, it is a beautiful day outside and there are lots of places to go and things to do. Yet we do hope to see someone, the hours get sort of long for Nan being in the bed 24 hours a day.
Dr. Patel, oncologist, visited this morning. He let us know that he and others in his practice are actively trying to find a bed for Nan at UCSF, Stanford or UC Davis. He says they won't stop searching until they find the correct team to help her with the leakage issues. That was reassuring to us. Dr. Ganey started calling Dr. Warren, Dr. Bertagnolli's friend last evening but so far no response. He is head of surgical oncology at UCSF and would know the right people to help Nan.
Our care continues to be very good this time and this private room is great. But Nan would much rather be at home in her own chair or bed relaxing. We have been so many places and in so many different circumstances that our sense of being is sort of mixed up. How we wish we could relax and just let healing take place as we move to recovery.
Amy, our wonderful ICU nurse at Brigham and Womens sent a message to the blog last evening or this morning. Amy, if you happen to see Dr. Bertagnolli we would appreciate your mentioning our situation. We are not sure if we are sending our emails to her to the correct address. We don't have her office phone number here with us at the hospital either. What we really need is once Erin is moved to the actual hospital that is going to attempt to repair the leak, we need the chance for the Dr who will end up doing the work to be able to talk for a few minutes with Dr. Bertagnolli, she knows how things are inside like no one else and I think that could help a lot. Even if she just brought Dr. Warren up to speed on the condition of the illelal loop and the uriters, that might help a great deal. Also Dr. Steele has inside knowledge and has already been emailing with our doctor here. We are trying to avoid coming back to Boston due to the very long trip involved, not sure how Erin could handle it at this time and what we would do about the constant drainage of the wound. Amy, it is so good to hear from you and remind your patients and caregivers how lucky they are to be in your care. We continue to be deeply grateful to Dr. Bertagnolli for the wonderful work she did. We are thankful to the max for her dedication. We are also very thankful for the ICU team and for Dr. Bs team of very good people. We will always remember our time there with great joy and appreciation.
Our son is at a youth rally in Fresno today and Nikki is deeply involved with a huge "yard" sale of sorts where thousands of items are sold. It started as a few parents with twins selling stuff to each other and it has grown to be a huge event now which Nikki helps with. Last time she made several hundreds of dollars above what she spent as she purchased other cute items for keanna. She has been working on Friday and today on the sale and will be very glad to come home tonight with it behind her. Since she helps with the sale she is allowed first access to the nice items, like a child in a candy store!! When we spoke on friday she was driving there in their Tahoe with stuff piled to the roofline of the SUV so she takes this really seriously and does great work there.
We hope to be able to see Nikki and Keanna tomorrow, that is something to look forward to for sure. Well I feel a walk coming on, time to stretch out the legs for a bit and go get a drink from the motorhome.
We are doing as well as one could expect here. Nan feels pretty good, is eating better than at any time in the past two weeks, is sleeping as well as you can in a hospital bed. I have lots of things going through my mind, taxes, scheduling, writeups, callbacks, paying bills, Nan's leak!!!!!
I keep trying to let God assume the load but it is sure an easy one to take back and worry over for awhile. Our lives are definitely day by day and sometimes hour by hour. Not easy to live this way but what are our choices? None so we keep on, holding on and treasuring calls and emails from friends and family. We love you all, it was so nice to have Barb and Gerry with us, it gave each of us someone to talk to about what ever was on our minds, serious or silly and it really was a good experience, one we will always treasure.
Sending our love, please continue to pray for God Healing of Nan's leaking problem. Also that His will be done in everything.
tim and nan
posted by Tim Mustard @ 2:54 PM
2 Comments:
At 4:22 PM,
Anonymous said…
Hi Tim & Nan
We are glad to read that Nan is eating better and even requesting more.
We gave some thought to coming over to visit today for a bit but it is so close to Carrol's danger window as far as the Chemo is concerned We feel that the chance of Her catching some bug is too great in the hospital setting to chance it. Next weekend We will not hesatate and could comfortably handle a visit time. Here's hopeing that You will be home and Nan well on the mend by then.
We do enjoy visiting with You Both and talking about the Sweet Music that We made together while with the Peden Choral. Never forget those good times , "Pot Lucks" included.
We will be Praying that Boston is reading and will have some good input for Your Medical team here that will be of help in Nan's healing.
I don't know if you follow Baseball at all but are'nt those Oakland A's something else? Looks like They will be playing the Tigers for the Championship.
We are hoping that Nan could be moved to UC Davis in Sacto, Much closer and convenient for Your friends in Sacramento to help. Better for Us too. Above all We want what is the Best for Nan. The Lord will work that out.
Have a good day and remember We that read and follow this Blog are All Praying for good things to happen very soon !!
Much Love,
Bob & Carrol
At 6:02 PM,
Anonymous said…
Nan & Tim,
Nan, you sound so good! That takes a little of the edge off of things just to know that you are not hurting so. Will be so thankful when they figure out how to correct your problem. I feel a trip to Branson coming on, so get with the program. Will check with you again in the AM. Have a good evening and, Tim, enjoy the motorhome. Sure makes things nice to have that thing when you need it! We've had some fun trips in it and good memories.
Love you both, Sharon
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