So far apart

Dear Friends,
3,000 miles is a long ways apart. I can't get enough of this lovely lady and I sure miss her when I'm in CA and she in MA. When Nan travels and I know she is having a good time then I'm fine with the distance between us but with whats happened in the last 24 hours apart its not so great.
We spoke several times yesterday during the day and I learned that Nan was moved to a different ward on the same floor to a private room. That concerned me since the place she went was not chosen by Dr. Greenberg but by the dictates of new patients needing the room she was in and a private opened up. All perfectly understandable. However we like to get to know our nurses, let them know Nan's history, of how long she has fought this GIST fight, get to know them as people and help them see Nan as a person as well not just a patient.
Our experience with ICU was so wonderful with professionalism and compassion demonstrated by every person we met. Amy, Loren and Heather tried to prepare us for the differences we would find when we went to the main floor. Our experience in ward B turned out to be very good. Yes each nurse had more patients to care for which we understand but we still were treated very well. So now Nan is on ward A, we know no one and so far the nurses seem stretched a little too thin.
Nan called me at 12:30 EST to tell me she was being transfused with a unit of blood. We both knew that would mean no sleep for the next 4 hours understanding the the nurses must check vitals constantly during a transfusion to make sure the body is accepting the blood. So at 4 this morning when the transfusion was completed then Nan got her Benedryl which is supposed to help her sleep. She got a couple hours. I woke at my usual waking time in Boston, 6:30 but of course it was 3:30 CA time. So I called and got the number for ward A and spoke to a very nice nurse who let me know what had taken place during the night. Soon my phone rang and it was Nan, the nurse had told her I called so she knew I was awake. We had a good conversation about the night and lack of sleep on her part. A little bit later she asked if she could sit in her chair, at this point she needs help to get to the chair with tubes and IV lines to handle in the process. She asked but it had been almost an hour and still no one came to help her get up. Then they were there to help so we hung up. A few minutes later she called again, the took her blankets off but were called away to another room by someone who was bleeding, well that made sense. However when Nan called me again it had been a long time, she was sneezing and freezing with no covers, her call button had fallen to the floor and she was pretty desperate. So I called the nursing station from here to report her needs hoping to get her some help. Finally it came and she got to sit in the chair. After about 20 hours in the bed the lower back begins to complain and one just needs to get up and sit. None of this would have gone down the way it did if I was there to help her. There are often times that having a relative in the room can help facilitate care. Dana was not there yet because she was chasing down a laundry mat which was located in an obscure part of the hotel but was on her way to help Nan the last time we spoke.
Nan's voice is now strong and I can't help but believe she will pass the next swallow test completely. They took away her little bottle of water this morning, it was bottle which she used to swish water around in her mouth and practice swallowing but the Drs. felt that was to risky pnemonia wise.
When I spoke to the nurse early this morning I found out that Nan's hermatocrit had dropped over the past few days from 33 to 25 and so they gave her a unit to bring her back up to 27 hopefully. I have heard no explanation as to why the drop, just hope and pray that the GI bleed has not returned. Its hard to be a caregiver to someone you love so much, someone you are so proud of, someone who has come so far in a short time, it is hard to be helpful from afar. Friday cannot come soon enough for me.
This morning I finally could not stay in bed any more even though I only got about 5 hours of sleep, got up and found clothes, took Starr and Lady for a walk to the park, did doggie dodo detail on the back deck and side dog run area, have my car on the battery charger, started Nan's car, had breakfast and am now at the computer. This morning Loree is going to come over and we will work on the books to know just where we are financially. I am trying to keep the business in God's hands and trust that He will make sense of everything.
The high point of the day was hearing nan's strong voice which seemed to place her in the room with me. The low point was when she called shivering, sneezing and forgotten by the nurses without blankets. Lets hope and pray that the day gets better and better. She didn't get to walk yesterday but PT should be by to help her walk today, that is so important, everyone says it is vital to getting out the door. I'm shipping out her new walker which is still in the box here at the house, shipping it directly to the hospital so she can use it instead of the one they have for her to use.
Thanks for staying the course with nan as she recovers. We both can't wait until she can be home again and we both know its going to be some time before that happens. Yet she has been ahead of schedule on everything so far so we have high hopes it will be soon.
Thanks for praying for Nan so faithfully. We prayed together on the phone night and Nan gets great strength from our combined prayers. She knows that there are lots of you praying and she is humbled and touched by your love.
With love,

tim