Blog at http://drpeg2003.blogspot.com/
April 27, 2006 (9:25am)
Today’s stream:
A few corrections/ clarifications. It was my older sister who told me where the grocery store was – I didn’t find it myself. Not that she’s really going to care that I didn’t give her proper credit, but just to set the record straight. :-) Also, Gary is not really at the point where I can get him a latte. That was a joke, with reference to the earlier remarks about caffeine withdrawal. BUT my understanding is that he will eventually be able to eat normally. Now he is being fed through a peg-tube going into his stomach, and through IVs in his arm. Last night, when I was trying to wade through all the tubing coming from him in order to get close to him in the bed, he joked, “Don’t step on my dinner.”
We are still concerned about his hearing. He had a hearing test yesterday and it showed a moderate-to-severe hearing loss. :-( They plan to do more testing. Again, they don’t think it is nerve damage, but they haven’t found a definitive cause – they keep saying something about the accident, and I keep saying it never showed up until after the second surgery. I would just rather he didn’t have to cope with this on top of everything else.
A speech therapist came by with the wonderful idea that Gary could point out the letters of the alphabet on a sheet of paper in order to communicate. Way ahead of you, lady. (I’m not complaining – I know they have a lot of patients to see to.)
On my way back from one of my visits, I arrived at an elevator just when it had opened and a white-coated doctor stepped into it. “Are you going up or down?” I asked. “Uh, I don’t know,” he replied. “Stay the hell away from my husband,” I thought.
I managed to set off the fire alarm in my room yesterday afternoon. I have been cooking in the bathroom, and I forgot to keep the door closed that time. The steam from my rice cooker set off the alarm. I rushed over to the phone to call the front desk to assure them there was no fire. When they answered, they said, “Ms. Daniels, are you all right? We were just trying to reach you.” “I’m fine,” I replied. “I set the alarm off.” “Were you in the shower?” he enquired. “Uh, yeah,” I lied (that’s the ticket). “We’ll reset the alarm. Keep the door closed when you shower,” he instructed. “I sure will.” I was afraid to tell them it was due to cooking, as I have carefully avoided reading any fine print on the card hanging on the back of my door that might say that no hot plates, etc., are allowed.
I have discovered I actually DO NOT know how to plug a cord into a printer without guidance, and the less said about that the better.
(1:25pm)
It’s early afternoon now, and at the morning visit I found out that Gary has a wound infection from one of the staples in his back. They claim this is not unusual, and will put him on antibiotics. They may also remove the staple, clean out the area, and let it heal without putting the staple back in. They have also found fluid in his lungs, which they feel may be the reason he is not progressing with being weaned off the ventilator as fast as they thought he would be. When I left, they were prepping him to put a camera into his lungs and check things out, then “bronch” (pronounced “bronk,” don’t know how they spell it) him, meaning they would suction some fluid out of his lungs. He also was feeling hot, even though the room was about 68 (and I was cold), but his temperature was only 99. I wish there weren’t all these extra things to be concerned about.
He decided not to finish the letter to his family, and I am glad. It was about cancelling his trip to Alaska with them. Yesterday, when it became clear that that was what he was writing, I told him that he could write it if he wanted, but that the trip was still more than two months away, and we had no idea how far along he might be in his rehab by then, maybe the trip was still a possibility. He didn’t think that was realistic and continued to write. But after I left, the physical therapist came, and he talked to her about it. She told him the trip was still more than two months away, who knew how far along he might be in his rehab by then, and that maybe the trip was still a possibility, so he decided he was writing the letter prematurely. Hmm. Of course, the therapist had the weight of medical authority behind her when she spoke those words. :-)
Somebody asked if I had accidently forgotten to include myself as going on the cruise. I did not. Although the level of severity of my CFS is less than it was a few years back, I haven’t really chanced taking trips. A year ago last Jan. I took the first one in about 10 years, a short one to visit my older sister in Nevada and to go to L.A. because the story I’ve been working on is set there and I needed to do some on-site research. I almost thought of chancing the Alaska trip, though I was nervous about it, but then the back problems haven’t cleared up, so I don’t think it would be wise to take such a trip.
More Mail! Thanks Ronnie, Michel, Krystyna and Piotr, Stan Schneller of COSAM, the
Barjenbruch family, Alexander and Lauren Shibakov (who sent a hospital survival kit), Mom G once again, and Jo – who made me laugh with the lifetime supply of earplugs she sent.
April 27, 2006 (9:25am)
Today’s stream:
A few corrections/ clarifications. It was my older sister who told me where the grocery store was – I didn’t find it myself. Not that she’s really going to care that I didn’t give her proper credit, but just to set the record straight. :-) Also, Gary is not really at the point where I can get him a latte. That was a joke, with reference to the earlier remarks about caffeine withdrawal. BUT my understanding is that he will eventually be able to eat normally. Now he is being fed through a peg-tube going into his stomach, and through IVs in his arm. Last night, when I was trying to wade through all the tubing coming from him in order to get close to him in the bed, he joked, “Don’t step on my dinner.”
We are still concerned about his hearing. He had a hearing test yesterday and it showed a moderate-to-severe hearing loss. :-( They plan to do more testing. Again, they don’t think it is nerve damage, but they haven’t found a definitive cause – they keep saying something about the accident, and I keep saying it never showed up until after the second surgery. I would just rather he didn’t have to cope with this on top of everything else.
A speech therapist came by with the wonderful idea that Gary could point out the letters of the alphabet on a sheet of paper in order to communicate. Way ahead of you, lady. (I’m not complaining – I know they have a lot of patients to see to.)
On my way back from one of my visits, I arrived at an elevator just when it had opened and a white-coated doctor stepped into it. “Are you going up or down?” I asked. “Uh, I don’t know,” he replied. “Stay the hell away from my husband,” I thought.
I managed to set off the fire alarm in my room yesterday afternoon. I have been cooking in the bathroom, and I forgot to keep the door closed that time. The steam from my rice cooker set off the alarm. I rushed over to the phone to call the front desk to assure them there was no fire. When they answered, they said, “Ms. Daniels, are you all right? We were just trying to reach you.” “I’m fine,” I replied. “I set the alarm off.” “Were you in the shower?” he enquired. “Uh, yeah,” I lied (that’s the ticket). “We’ll reset the alarm. Keep the door closed when you shower,” he instructed. “I sure will.” I was afraid to tell them it was due to cooking, as I have carefully avoided reading any fine print on the card hanging on the back of my door that might say that no hot plates, etc., are allowed.
I have discovered I actually DO NOT know how to plug a cord into a printer without guidance, and the less said about that the better.
(1:25pm)
It’s early afternoon now, and at the morning visit I found out that Gary has a wound infection from one of the staples in his back. They claim this is not unusual, and will put him on antibiotics. They may also remove the staple, clean out the area, and let it heal without putting the staple back in. They have also found fluid in his lungs, which they feel may be the reason he is not progressing with being weaned off the ventilator as fast as they thought he would be. When I left, they were prepping him to put a camera into his lungs and check things out, then “bronch” (pronounced “bronk,” don’t know how they spell it) him, meaning they would suction some fluid out of his lungs. He also was feeling hot, even though the room was about 68 (and I was cold), but his temperature was only 99. I wish there weren’t all these extra things to be concerned about.
He decided not to finish the letter to his family, and I am glad. It was about cancelling his trip to Alaska with them. Yesterday, when it became clear that that was what he was writing, I told him that he could write it if he wanted, but that the trip was still more than two months away, and we had no idea how far along he might be in his rehab by then, maybe the trip was still a possibility. He didn’t think that was realistic and continued to write. But after I left, the physical therapist came, and he talked to her about it. She told him the trip was still more than two months away, who knew how far along he might be in his rehab by then, and that maybe the trip was still a possibility, so he decided he was writing the letter prematurely. Hmm. Of course, the therapist had the weight of medical authority behind her when she spoke those words. :-)
Somebody asked if I had accidently forgotten to include myself as going on the cruise. I did not. Although the level of severity of my CFS is less than it was a few years back, I haven’t really chanced taking trips. A year ago last Jan. I took the first one in about 10 years, a short one to visit my older sister in Nevada and to go to L.A. because the story I’ve been working on is set there and I needed to do some on-site research. I almost thought of chancing the Alaska trip, though I was nervous about it, but then the back problems haven’t cleared up, so I don’t think it would be wise to take such a trip.
More Mail! Thanks Ronnie, Michel, Krystyna and Piotr, Stan Schneller of COSAM, the
Barjenbruch family, Alexander and Lauren Shibakov (who sent a hospital survival kit), Mom G once again, and Jo – who made me laugh with the lifetime supply of earplugs she sent.
posted by Peg Daniels at 12:12 PM
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