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| Saturday, August 20, 2005 |
| 08.20.05 (5:14 am) [edit] |
John had a broncoscopy and biopsy at around 1:30 yesterday. They didn't get back into the room until 3:30pm. He was awake, and told me he was awake for about the last 45 seconds of the proceedure, and raised his hand during it to let them know, and he heard them telling him they were almost done. They also were checking his vocal cords, and he said the docters told him they were working. I didn't talk to anyone, but John kept asking for food. They assured him it wouldn't happen until at least the morning. He did walk in the morning, and he got his bath early before I was there, even though he asked them to wait and let me do it(I have been doing it for most of the time). They made him help. He has been a little argumentitive, and stubborn, about the swallow thing, and what exercise he should be doing. His nurses tell him he could/should be exercising his legs and arms while in bed, but he keeps insisting he will be fine once he goes home to his exercise equipment, and since he didn't hear it from the physical therepist he is ignoring it. I suspect the predisone has alot to do with his moods, and it has alot of side affects. He is also quite frustrated at not being able to do more, and wanting to go home so badly. He isn't quite as emotional since they lowered the dose, but still has some insomnia, and mood swings. He also has no trouble ordering me around since he can talk. I did get him to say please when he wants his legs/feet massaged. That's progress.
Someone mowed my grass. THANK YOU! I don't know who did it. It should have been josh, but school started, and he of course has didn't get to it. I can't even tell you if it needed mowed.
I am feeling overwhelmed today. With John moody/argumentative/frust rated at not being able to go home, but still wanting me at the hospital for more then 12 hours, it makes for a long day. My kids think I've abandoned them, and I think they could help out more. One seems depressed and won't quit sleeping, and one is nowhere in site. I go from frustration to feeling guilty. Maybe that's how John feels. I need time to do bills, bank, get gas even and it cuts into my sleep time, or worse my hospital time. I need to find out about John going home and medicines, exercise and therepy and I'm afraid they are suddenly going to do all this education when I finally have to go back to work. I have to disinfect the house. It has to be cleaned and disinfected before he comes home. Dusted, scrubbed, door knobs, railings, telephone, floors, bathrooms, couters, cabinets, refrigerator and freezer cleaned out and everything cleaned with 1 part bleach, 9 parts water, or a disinfectant that is enviormentally friendly. Which i now have to go get... sometime. He can get an infection just from not washing a can before he uses it. Drinking water and ice needs to be filtered. He can't be around alot of dust like no changing vacuum bags, or furnace filters, and he now he has to be more careful in the sun, and in the pool. No babies without protection in the pool(absolutely no peeing in the pool kids!), and sunscreen. Luckily we filter our drinking water, but still need to do the ice. I have to wipe down the bed, and clean the laundry area the kids have trashed. I'm supposed to be going through bags of clothes and stuffed animals for the yard sale next week, and get Brit's bunkbeds out of her room also for it, and the place is constantly a mess.
John will have to wear a mask when in crowds, no sick people at the house, and even not alot of people for the first couple of months. Noone can use our bathroom, including our kids(they have one they can use), he needs to wash cans, food, not eat after anyone, and everyone has to wash hands when they come in. I will quit whinning now, as writing it down makes me feel better. It's strange that the little stuff would get to me so much, after all I've been through with him, and considering he was on his deathbed a couple of weeks ago. I'm thinking.... maid service. Now I really feel better!
Here is something really scary: As little as one year ago they didn't list transplant patients by need, but they went on a list and waited until their name came around to the top. No matter how long it took. They just changed the criteria recently, within the last twelve months sometime, to incorporate need and how sick you are as one of the determining factors as to where your name appears on the list. Last year, even though John was so sick, he wouldn't have been moved up on need. John would certainly have died within a week of going on the oscillator probably waiting for lungs, if this hadn't have changed so recenly.
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