May 4, 2006
Last night I asked Gary if it felt strange to go for so long without eating. He said “surprisingly, no.” I asked him how about not being able to talk, and he said it was frustrating. I asked if that was because he had so many thoughts that couldn’t be expressed without going through the laborious procedure of tapping out letters, but he said that wasn’t it. It was the inability to communicate even the simplest things to the nurses. Some don’t seem to know of the alphabet board (I didn’t realize that and have now put it smack dab on the counter where they can’t miss it) and others, though they know of the board have difficulty stringing his letters into words – hmm; evidently I do do it better than some of them. He says that they are getting better at interpreting his signals, though, and some can read the board quite well. Seems like there should be some sort of training – another thing to add to my list of recommendations :-)
We finished up the night rather tearfully as Gary dictated a short note to the family of his friend. I know the man meant a great deal to him. I wished I was more able to “get at” Gary to give him a better hug of comfort, but with all the tubes and the width of the bed it isn’t possible.
I notice that the young man who had been in the room next to Gary’s is no longer there, and I no longer run into his parents in the waiting room hall. I wonder what happened. They have been here as long as I, there son having been in a truck wreck – tossed around the inside of the truck and then thrown out the window. His parents had told me that medically there wasn’t anything wrong with their son, except that he wouldn’t wake up. That would, at least in the short run, be far more anxiety-producing than what I am going through, I would think. Since the time he’s been removed from that room I haven’t seen the same nurses Gary had been having before (the two of them always shared the same nurse), and the new ones don’t seem to know what happened to the young man, so it feels odd just to have him disappear like that.
I don’t talk to a lot of the other families here, except occasionally very briefly. I know some people probably find it a help to talk to the others here in situations similar to theirs, but at least for now, I find it too much to bear.
In the morning Di informed me I had made the right choice about the townhouses; even she heard the traffic – including ambulances – go by. “Princess and the pea” me probably wouldn’t have gotten a wink.
This morning (Thursday) I found that they plan to keep Gary on the trache tube for as long as he tolerates it (according to how he is feeling and his blood gases, etc.) rather than replacing it with the ventilator after a certain number of hours. Definite progress! His bed sore also looks much better than even yesterday. During my conversation with the nurse Gary started wiggling the fingers of his right hand as a “signal,” and I asked whether there was any word on when that big cast might be removed. The nurse said no word yet, and that she bet there was a certain finger he really would like to move.
After that visit I returned to the hotel to find a package had come for me. The desk clerk said he had one question for me: what was up with the Pierce Brosnan sticker on the front of it? I started laughing and knew immediately who had sent it. Thanks, Kitn, for the People’s article on the 2001 Sexiest Man Alive, for the card to me and Gary from you and “the groups,” and for the journal, altho I am pretty much letting it all hang out here ;-)
When we returned to the hospital for the early afternoon visit (after getting in another massage
:-)) we found that they had given Gary a different bed – an “airflow bed.” Evidently air flows through it constantly, which is supposed to help keep the pressure off his wound and also keep the area dryer. It looks really comfy and is a pretty aqua blue color, much more cheery than the usual hospital beds. Gary asked if he could take it home. They told us it cost $80,000 dollars, so we haven’t bought it yet ;-)
When we returned to the hotel after that visit, the doors were, as they have been, locked, and the desk clerk was the one who jokes around with me (the same one who had made the comment about the sticker). He could’ve just buzzed me in, but instead he came running around the desk to stand in front of the doors where we were, and then he started jumping up and down and making faces at me and Di. We cracked up and shook our fists at him.
After a little break, Di hauled me to Wal-Mart where we picked up a few things, most importantly a DVD player. I got the cheapest, lightest one (7" screen), and when I set it on the laptop holder upon returning to Gary’s bedside, it looked like it would work really well. We spent the rest of the 5:30 visit trying to figure out how to charge up the battery. I think we figured out how it basically works and will try it out tomorrow.
I managed to nearly mow someone down at the eight-thirty visit. I couldn’t figure out why all these people were parked just inside the left door, which was open, so I opened the right one. Unfortunately a woman was standing right there and I hit her with the door. She was definitely not in a forgiving mood when I apologized. Oh, well, something more to feel guilty about.
Gary looked asleep when we arrived. I stood next to the bed for a few minutes and when he didn’t open his eyes, we turned to leave. I wrote him a note saying we’d come and gone, but just after Di and I had removed our gowns, she noticed his eyes had popped open. He waved us in, but he was very sleepy. After Di and I carried on most of the conversation, I asked if he wanted me to read Dylan. He said yes, but almost immediately he decided he was too tired to listen. So we cut the visit short.
The nurse told us that tomorrow they might move him to the “other side” – the TB nursing unit, as opposed to the TBICU. I won’t hold her to it, but I take this as a positive side that that time is getting close.
Last night I asked Gary if it felt strange to go for so long without eating. He said “surprisingly, no.” I asked him how about not being able to talk, and he said it was frustrating. I asked if that was because he had so many thoughts that couldn’t be expressed without going through the laborious procedure of tapping out letters, but he said that wasn’t it. It was the inability to communicate even the simplest things to the nurses. Some don’t seem to know of the alphabet board (I didn’t realize that and have now put it smack dab on the counter where they can’t miss it) and others, though they know of the board have difficulty stringing his letters into words – hmm; evidently I do do it better than some of them. He says that they are getting better at interpreting his signals, though, and some can read the board quite well. Seems like there should be some sort of training – another thing to add to my list of recommendations :-)
We finished up the night rather tearfully as Gary dictated a short note to the family of his friend. I know the man meant a great deal to him. I wished I was more able to “get at” Gary to give him a better hug of comfort, but with all the tubes and the width of the bed it isn’t possible.
I notice that the young man who had been in the room next to Gary’s is no longer there, and I no longer run into his parents in the waiting room hall. I wonder what happened. They have been here as long as I, there son having been in a truck wreck – tossed around the inside of the truck and then thrown out the window. His parents had told me that medically there wasn’t anything wrong with their son, except that he wouldn’t wake up. That would, at least in the short run, be far more anxiety-producing than what I am going through, I would think. Since the time he’s been removed from that room I haven’t seen the same nurses Gary had been having before (the two of them always shared the same nurse), and the new ones don’t seem to know what happened to the young man, so it feels odd just to have him disappear like that.
I don’t talk to a lot of the other families here, except occasionally very briefly. I know some people probably find it a help to talk to the others here in situations similar to theirs, but at least for now, I find it too much to bear.
In the morning Di informed me I had made the right choice about the townhouses; even she heard the traffic – including ambulances – go by. “Princess and the pea” me probably wouldn’t have gotten a wink.
This morning (Thursday) I found that they plan to keep Gary on the trache tube for as long as he tolerates it (according to how he is feeling and his blood gases, etc.) rather than replacing it with the ventilator after a certain number of hours. Definite progress! His bed sore also looks much better than even yesterday. During my conversation with the nurse Gary started wiggling the fingers of his right hand as a “signal,” and I asked whether there was any word on when that big cast might be removed. The nurse said no word yet, and that she bet there was a certain finger he really would like to move.
After that visit I returned to the hotel to find a package had come for me. The desk clerk said he had one question for me: what was up with the Pierce Brosnan sticker on the front of it? I started laughing and knew immediately who had sent it. Thanks, Kitn, for the People’s article on the 2001 Sexiest Man Alive, for the card to me and Gary from you and “the groups,” and for the journal, altho I am pretty much letting it all hang out here ;-)
When we returned to the hospital for the early afternoon visit (after getting in another massage
:-)) we found that they had given Gary a different bed – an “airflow bed.” Evidently air flows through it constantly, which is supposed to help keep the pressure off his wound and also keep the area dryer. It looks really comfy and is a pretty aqua blue color, much more cheery than the usual hospital beds. Gary asked if he could take it home. They told us it cost $80,000 dollars, so we haven’t bought it yet ;-)
When we returned to the hotel after that visit, the doors were, as they have been, locked, and the desk clerk was the one who jokes around with me (the same one who had made the comment about the sticker). He could’ve just buzzed me in, but instead he came running around the desk to stand in front of the doors where we were, and then he started jumping up and down and making faces at me and Di. We cracked up and shook our fists at him.
After a little break, Di hauled me to Wal-Mart where we picked up a few things, most importantly a DVD player. I got the cheapest, lightest one (7" screen), and when I set it on the laptop holder upon returning to Gary’s bedside, it looked like it would work really well. We spent the rest of the 5:30 visit trying to figure out how to charge up the battery. I think we figured out how it basically works and will try it out tomorrow.
I managed to nearly mow someone down at the eight-thirty visit. I couldn’t figure out why all these people were parked just inside the left door, which was open, so I opened the right one. Unfortunately a woman was standing right there and I hit her with the door. She was definitely not in a forgiving mood when I apologized. Oh, well, something more to feel guilty about.
Gary looked asleep when we arrived. I stood next to the bed for a few minutes and when he didn’t open his eyes, we turned to leave. I wrote him a note saying we’d come and gone, but just after Di and I had removed our gowns, she noticed his eyes had popped open. He waved us in, but he was very sleepy. After Di and I carried on most of the conversation, I asked if he wanted me to read Dylan. He said yes, but almost immediately he decided he was too tired to listen. So we cut the visit short.
The nurse told us that tomorrow they might move him to the “other side” – the TB nursing unit, as opposed to the TBICU. I won’t hold her to it, but I take this as a positive side that that time is getting close.
posted by Peg Daniels at 7:47 PM
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