I need to sleep. Today was terribly long. James was scheduled to transfer over to Mt. Sinai this morning at 10:00 a.m. by ambulance. There was a lack of communication between the nurses, doctors, and EMT drivers and the result was that James was placed on a stretcher, almost out the door, only to discover that the IV inserted last night had a problem and that they would have to perform another surgical procedure to replace it. The EMT guys were pretty grouchy after having waited for over two hours on the assumption that we were merely anticipating the issuance of discharge paperwork but were kind enough to help me place James back in his bed.
Since James was scheduled to leave in the morning and then, wheeled away for the IV implant, he was never given nutrition of any sort after 8:00 a.m. I was bothering the nurses, asking them to call the doctor, so that James would not become dehydrated. They did not connect him until 4:30 in the afternoon, the time we were scheduled for our second departure. At one point, the nurse entered the room and asked me about the nutrition status for James--as if I would be informed before her! She was his floor nurse! I also had to call for a nurse to change James and she never came. I decided I knew enough from being with James for the past month and changed the bedclothes on my own! I utilized all the techniques for carefully shifting his weight and folding the sheets underneath his body. I had him completely clean and dry by the time the nurse finally poked her head into the room. I am grateful that Mt. Sinai held the bed for us.
We finally arrived at Mt. Sinai this evening around 7:00.
Before we left Bellevue, there was a moment when I received the news that the ambulance was on the way and that we would definitely be discharged. We had about an hour to wait. I turned on Glenn Gould playing the Goldberg Variations. I was holding James's hand. He was listening very intently. James reached out and grabbed Frank (remember, the black footed ferret stuffed toy) and then, placed him right into his left hand which then held onto Frank's tail (he actually made an effort to use his weak hand). James then started to pluck a bit at the sheet with his his right hand. It was if he was using both hands to move along with the piano music. I could not help but cry--he was being so tender and the movement of his hands was quite beautiful.
He has a nice room at Mt. Sinai. The intake liability man made me sign a sheet of paper for the insurance company that said I did not request a private room--it was the only one available--otherwise, I would be responsible for paying over $500 a day. I am grateful that the timing allowed him a private room! Not sure how long it will last. He has his own shower and a wall closet for his things! I was told that he has to have several sets of clothes--sweatpants and t-shirts--because he has to dress every day, down to his shoes, as part of the program. It will be such a shock to James. He will have to work very hard indeed. I have to hit the stores tomorrow morning because I do not think James owns one pair of sweat pants! I have to dig around his closet for tennis shoes too!
I would like to thank everyone, once again, for their support whether it be food through the meal train, nightly prayers, contributing art for the silent art auction, taking care of Imogen, washing our laundry, parking the car, providing a perfect gin & tonic, making me laugh, sending excellent playlists of music for James, or direct funding on the GoFundMe site. I have also received so many beautiful letters, cards, and email messages--too wonderful for words, truly! I am forever grateful.
Tomorrow is a new day and the true start of James's hike up the mountain. What I thought was the hike was really just a stroll through the valley, albeit, the valley of the shadow of death!
Since James was scheduled to leave in the morning and then, wheeled away for the IV implant, he was never given nutrition of any sort after 8:00 a.m. I was bothering the nurses, asking them to call the doctor, so that James would not become dehydrated. They did not connect him until 4:30 in the afternoon, the time we were scheduled for our second departure. At one point, the nurse entered the room and asked me about the nutrition status for James--as if I would be informed before her! She was his floor nurse! I also had to call for a nurse to change James and she never came. I decided I knew enough from being with James for the past month and changed the bedclothes on my own! I utilized all the techniques for carefully shifting his weight and folding the sheets underneath his body. I had him completely clean and dry by the time the nurse finally poked her head into the room. I am grateful that Mt. Sinai held the bed for us.
We finally arrived at Mt. Sinai this evening around 7:00.
Before we left Bellevue, there was a moment when I received the news that the ambulance was on the way and that we would definitely be discharged. We had about an hour to wait. I turned on Glenn Gould playing the Goldberg Variations. I was holding James's hand. He was listening very intently. James reached out and grabbed Frank (remember, the black footed ferret stuffed toy) and then, placed him right into his left hand which then held onto Frank's tail (he actually made an effort to use his weak hand). James then started to pluck a bit at the sheet with his his right hand. It was if he was using both hands to move along with the piano music. I could not help but cry--he was being so tender and the movement of his hands was quite beautiful.
He has a nice room at Mt. Sinai. The intake liability man made me sign a sheet of paper for the insurance company that said I did not request a private room--it was the only one available--otherwise, I would be responsible for paying over $500 a day. I am grateful that the timing allowed him a private room! Not sure how long it will last. He has his own shower and a wall closet for his things! I was told that he has to have several sets of clothes--sweatpants and t-shirts--because he has to dress every day, down to his shoes, as part of the program. It will be such a shock to James. He will have to work very hard indeed. I have to hit the stores tomorrow morning because I do not think James owns one pair of sweat pants! I have to dig around his closet for tennis shoes too!
I would like to thank everyone, once again, for their support whether it be food through the meal train, nightly prayers, contributing art for the silent art auction, taking care of Imogen, washing our laundry, parking the car, providing a perfect gin & tonic, making me laugh, sending excellent playlists of music for James, or direct funding on the GoFundMe site. I have also received so many beautiful letters, cards, and email messages--too wonderful for words, truly! I am forever grateful.
Tomorrow is a new day and the true start of James's hike up the mountain. What I thought was the hike was really just a stroll through the valley, albeit, the valley of the shadow of death!
Good-bye valley. Hello Mountain!!
ReplyDeleteWhat a harrowing day indeed! Thinking of you and this new step -- so glad to hear the room at Mt. Sinai is AOK. XO
ReplyDelete