Applesause Please!!

Its a great day here in Boston!
Althought Nan had less than a perfect night of sleep she is sure going strong this morning. When I got here at 6:50 she was awake and ready to get up into her recliner. We waited until the surgery team came to examine and repack her incision then Dana and I helped her move from the bed to standing up to sitting in the recliner. Today we tried fewer pillows and it ended up more comfortable for her. She stayed in the chair for 1 hour 50 minutes. She was in the chair when the swallow tester came calling. Nan had been practicing since yesterday but with a bottle, the lady used a spoon of water at a time and it sort of threw off Nan's rythmn. However when the applesause came out she ate the entire carton. So for now she officially can't have water yet but she can have up to 3 soft foods like yogurt, applesause, jello or pudding. She was and is elated with the progress and licked the carton dry. Finally she decided that being back in bed would not be such a bad idea but before she went back I left to have breakfast in the caf and she dragged over the computer, well she and Dana did and she read some emails. Does this sound like progress to you? Sure looks like it from here. Right now shes watching an old Clint Eastwood movie and considering snoozing a bit. I'd say she deserves it after the morning she has had. And of course we have not heard or seen from PT yet and they will walk her, exercise her and do lots of good things to help her gain her strength.

Today I'm going to do a dry run on the T, the above ground transit system, which is rumored to go all the way to the airport. I need it because I have to be at the airport in the morning fairly early and I don't want any hitches getting there at all. Nan thinks she can spare me for the hour or so it will take to figure out the system. Should save a lot over using a taxi which is nearly $40 each way. I find it hard to even consider that I am leaving here for 4 days when Nan can't come home with me. She is finding it tough to consider as well. But all she says to me is, GO. I will be able to attend to business on tuesday pm, all day wed., all day thurs and friday morning before I leave SF at around noon to come back. Dana and Roxanna will be here and Marilyn is coming up on Wednesday. I will hate missing her improvements that occur on a daily basis. I can see us leaving the hospital now in a fairly short time, not months at least.

I will probably not be blogging an early report tomorrow since I will be in the air and the laptop is staying here with Nan in case she feels up to starting emailing. Wouldn't that be great!

Her incision is continuing to progress in slow healing, it ought to with all the expert eyes that check it out every day. I finally was able to persuade the team that Nan needed better protection on her nephrostomy tubes, I found one completely lose the other day, one pull and it would be out of the kidneys and she would have to go through a surgery process to put in a new one. Now we have two pull points covered with tagaderm so if she snags the line it won't be so likely to pull out of her back. I just keep pushing on some things and other things I hang back and watch. The care level in this step down room has been very good. It can't be as good as ICU because the ratio is one to one there but they are very attentive and they listen carefully to our concerns. We are very confident in the medical attention Nan has received from day one, all the way from Dr. B to Susan our nurse today. Dana Farber Cancer Institute people have been totally great and it looks like Nan will be able to start Gleevec and the other new drug now since it can be taken with applesause. That is great news because the tumors come back at an alarmingly fast rate after surgery.

It is often difficult to place the events of the past 35 days in perspective. I believe that it was God's plan that we be here in Boston when the blockage became severe, that Dr. Bertagnolli still be in town on that day, that she be willing to consider and then carry out the surgery, that a ICU team be ready to handle GIST surgery cases, that God's glory could be seen as He again and again guided the medical teams through unchartered waters, that Nan had an enormous desire to live and fight back. Now we are here a month later and Nan looks like Nan again, she is gaining strength every day, is feeling pretty good, is even being allowed to eat today and is healing up nicely.

I have learned a lot of things about people and about myself while we have been here. A person is really capable of a lot more than they think they are and other people even strangers can render a lot of help. The east is know as a place where people keep to themselves and don't reach out. However when given a chance to do so they are great. I have me many anxious people in the ICU waiting room and have become prayer pardners with many of them. We know the details about our patient and about their patient, about where we live and about where they live. The ICU can be the loneliest place in the world at first. Jason was especially good about talking people through their pain and fears. I now stop by the ICU waiting room to see if there are any new relatives waiting for word. I can tell them things they need to know, where the cafe is, where the nearest rest rooms are, where they can get blankets and a cot if they need such, how to work with the ICU nurses to help them help the patients, about my first night so they can know they are not alone in the process. I would also urge them to consider talking to the chaplin, the team is very good at the hospital and they are helpful.

Well time to get going I guess and do the test run to the airport. Got several things to do today before sleeping tonight. It will certainly feel different to be heading home without Nan at my side but I really think we are on the way finally for the next trip with her. Please pray that Nan will keep improving every day, that her kidneys will work better, that her incision will continue to heal, that her strength will increase.

Thank you for being there for us in every way.

With love,

Tim, Nan and Dana