Oh, she just couldn't wait to tell everyone who came in the door today - last night, aunt I's nephrologist came in to tell her that she will no longer be getting dialysis three times a week! They will monitor her liquid output and her numbers and make sure everything is okay, but she is no longer getting mandatory 3x dialysis; it's now 'as needed.' She is so happy, she asked for the speaking tube so she could: tell her respiratory therapist, tell her nephew, tell her speech therapist, tell the lady who cleaned the room, tell the CNA... she told everyone.
I can understand why... Being on a respirator and being on dialysis are the two conditions that will limit which nursing facility she can go to next. The respirator is the biggie, and she's working hard on that one, but the dialysis would also restrict her choices, so she's absolutely thrilled.
She was tired today, and had the therapists working her upper body, her legs and lower body, she was off the vent for 12 hours yesterday and would be off it for 12 today, too. Plus she apparently had a washing to end all washings overnight - the CNA or nurse cleaned, in her words, "every nook and cranny," plus she got her hair washed. Apparently, our little meeting yesterday yielded results. As long as they keep it up, I'll feel better about being so far away. I almost said, "as long as dad will continue the fight," but I laughed at that one. Why is it that formerly very successful corporate people (like my dad) revert to 10-year-olds being afraid to speak up for what they want? I'm going to have to push hard from 3,000 miles away next week to make sure aunt I doesn't lose any ground.
A very good day, I'd say; wouldn't you??
Friday, July 17, 2009
Thursday, July 16, 2009
Family Consult at Kindred
When Dad and I got to aunt I's room today, Kiersi (one of her physical therapists) was working with her; they had already decided that since aunt I was very tired, she would just sit on the edge of the bed today instead of getting into the chair (which is very tiring for her). Dad and I were going to have our "family consultation" at 2:00 today; she wanted to be awake and alert enough to hear our report when we came back. Smart cookie, that one. She told us a bit of a horror story, though, about having soiled herself overnight and sitting in her mess for 6 hours, with no one coming to clean her up. She was also told by a morning nurse that her panic attacks were her own fault, and another morning nurse shut off the room air conditioning (which is very problematic since she really overheats when she's taken off the ventilator).
Just as we were going in to the meeting, her speech and swallow therapist came in, and while she had her speaking tube in, we called her good friend Joan in New York, who was delighted to hear her - really *hear* her. We left aunt at 2:00, with the two of them continuing the therapy.
So the "family consultation" was meeting with the directors of the areas of expertise of the hospital. We get to bring all our questions and meet with the case nurse, the head of all rehab, the head of respiratory rehab, and the head dietitian to get answers. Instead of starting in with her physical status, I told them about her overnight experiences. They all had the good sense to look aghast and started scribbling notes. "That should never happen," "thank you for bringing this to our attention," "we have no problem telling workers that if they don't meet the level of care we expect they are welcome to work elsewhere." I told them that this was probably not an aberration, that long response times for nurse calls are not uncommon; we've experienced waits of 20 and 30 minutes, and even at that, we often have to go to the nurses' station to get attention. They said when that happens, I should ask for the nursing supervisor, not the charge nurse and bring it to his/her attention. I guess it really does come down to a squeaky wheel.
We then talked about aunt I's progress. They all agree, she's doing very well. On Monday, the doctor had ordered her off the vent for a half hour or "as tolerating,"; that was the day she handled 2 hours and 15 minutes. So, with such a good day, he upped the orders to be two 2-hour sessions off the vent per day, which she was doing Tuesday and Wednesday. Since she tolerated that so well, he upped the ante: 12 continuous hours off the vent. She still has the VRE infection, but apparently does not have her yeast infection anymore. I asked them how often the patients are supposed to be bathed and have their gowns changed. They said twice a day, once during the day and once at night. I told them that for the previous 2 or 3 days, I didn't think hers had been changed. More scribbling, more notes.
Her big milestones going forward all have to do with getting off the vent and eventually having the trach removed. They count in 3 day chunks of time. I think the ultimate 3-day chunk is 3 days completely off the vent and able to cough up her secretions successfully. Of course, the insurance company's view of when she can be moved is another story. The scary thing we heard is that if she can't/won't wean, there are no respiratory-dependent facilities in the state of Florida to transfer her to. She'd have to go out of state. Good lord...
We got back and auntie I was resting. We gave her our report and told her that even when she's tired, she has to get in the chair every day, has to get her upper body muscles moving around, and has to do her swallow exercises. Off the vent, out of that place. She knows her marching orders.
Just as we were going in to the meeting, her speech and swallow therapist came in, and while she had her speaking tube in, we called her good friend Joan in New York, who was delighted to hear her - really *hear* her. We left aunt at 2:00, with the two of them continuing the therapy.
So the "family consultation" was meeting with the directors of the areas of expertise of the hospital. We get to bring all our questions and meet with the case nurse, the head of all rehab, the head of respiratory rehab, and the head dietitian to get answers. Instead of starting in with her physical status, I told them about her overnight experiences. They all had the good sense to look aghast and started scribbling notes. "That should never happen," "thank you for bringing this to our attention," "we have no problem telling workers that if they don't meet the level of care we expect they are welcome to work elsewhere." I told them that this was probably not an aberration, that long response times for nurse calls are not uncommon; we've experienced waits of 20 and 30 minutes, and even at that, we often have to go to the nurses' station to get attention. They said when that happens, I should ask for the nursing supervisor, not the charge nurse and bring it to his/her attention. I guess it really does come down to a squeaky wheel.
We then talked about aunt I's progress. They all agree, she's doing very well. On Monday, the doctor had ordered her off the vent for a half hour or "as tolerating,"; that was the day she handled 2 hours and 15 minutes. So, with such a good day, he upped the orders to be two 2-hour sessions off the vent per day, which she was doing Tuesday and Wednesday. Since she tolerated that so well, he upped the ante: 12 continuous hours off the vent. She still has the VRE infection, but apparently does not have her yeast infection anymore. I asked them how often the patients are supposed to be bathed and have their gowns changed. They said twice a day, once during the day and once at night. I told them that for the previous 2 or 3 days, I didn't think hers had been changed. More scribbling, more notes.
Her big milestones going forward all have to do with getting off the vent and eventually having the trach removed. They count in 3 day chunks of time. I think the ultimate 3-day chunk is 3 days completely off the vent and able to cough up her secretions successfully. Of course, the insurance company's view of when she can be moved is another story. The scary thing we heard is that if she can't/won't wean, there are no respiratory-dependent facilities in the state of Florida to transfer her to. She'd have to go out of state. Good lord...
We got back and auntie I was resting. We gave her our report and told her that even when she's tired, she has to get in the chair every day, has to get her upper body muscles moving around, and has to do her swallow exercises. Off the vent, out of that place. She knows her marching orders.
Busy day: dad gets visit fm home nurse, I wait for A/C repair @ aunt's condo, we both meet w/care providers @ Kindred to get status update.
Monday, July 13, 2009
Tipping point
(Apologies to those of you who just got this in email form.)
It must have happened in aunt Irene's brain about 5 days ago - how to get her out of the hospital. There has been such a marked difference between last week and this week, especially in her panic level at changes in the ventilator. She's stronger, more able to 'skootch' herself up in bed. She's been able to write notes to the staff when they have not been able to read her lips. And she had been on the lowest setting of the ventilator for probably 3 days straight - no vent even at night to rest.
Today, Monday, is one of her dialysis days. In the past she's been very tired, so dad and I don't visit. "It's a long way to go to watch her sleep" was our thought process, and besides, those days gave us a chance to run errands and get other stuff done. Now, though, she's recovering from the tiredness of dialysis faster, so I thought I would surprise her by taking the drive today. When I got near her room, I saw that she was sitting in the chair! She was awake and alert and smiled so broadly when she saw me. She said that she had been in the chair for 2 hours, and was due to get back in bed soon, so she had hoped I would get there before they moved her. I also noticed that she wasn't on the ventilator but taking a page from Michelle's theory ("If you don't tell her, she won't panic"), I didn't point this out to her.
A few minutes after I arrived, the CNA came to move her back to bed, and when I stepped out of the room to let him do his thing, I ran into Michelle (our favorite respiratory therapist). She told me that aunt I had been doing so well, that the pulmonary doctor had placed orders for her to be off the vent for a half-hour "or as tolerated." That meant that if Michelle felt aunt I could stay off longer, she could keep her off. When I asked Michelle if aunt I knew she was off the vent, she said she did - and hadn't panicked at all. She asked for a little bit of the anti-anxiety meds, but had been fine. By the time Michelle put her back on the ventilator, aunt I had been off completely for 2 hours and 15 non-panicking minutes. Aunt I was SO proud of herself; that's why there's such a big smile on her face in the attached photo. I am so very proud of her, too. And to think I almost didn't go today to see this. She still has a long, tough road ahead of her to get strong enough, but I think she'l get there. She said this when this whole thing started and she's right: she's one tough cookie.
Dad's also doing quite fine. The visiting nurse came around yesterday and replaced his pressure bandage with a small gauzy bandage. If the small bandage was dry today, he'd get the go-ahead to take a shower. She came, she checked, he passed! She'll come back Thursday or Friday, then once again next week before he sees the surgeon on 7/24 for a wound check. Dad's still got a fair amount of bruising, but the swelling has gone down quit a bit and he didn't need any pain meds today.
Which means... We've started the "Meg comes home" countdown! I'm taking a late afternoon flight next Monday, July 20, and will be back on terra-very-Califirma around 10:00 that night. (But who's counting...?) OMG, I so need to get home and recharge myself.
Thank you again, everyone, for all your kind words and good thoughts. They've all paid off, in spades. (Keep sending them Florida way, though - none of it is wasted!)
It must have happened in aunt Irene's brain about 5 days ago - how to get her out of the hospital. There has been such a marked difference between last week and this week, especially in her panic level at changes in the ventilator. She's stronger, more able to 'skootch' herself up in bed. She's been able to write notes to the staff when they have not been able to read her lips. And she had been on the lowest setting of the ventilator for probably 3 days straight - no vent even at night to rest.
Today, Monday, is one of her dialysis days. In the past she's been very tired, so dad and I don't visit. "It's a long way to go to watch her sleep" was our thought process, and besides, those days gave us a chance to run errands and get other stuff done. Now, though, she's recovering from the tiredness of dialysis faster, so I thought I would surprise her by taking the drive today. When I got near her room, I saw that she was sitting in the chair! She was awake and alert and smiled so broadly when she saw me. She said that she had been in the chair for 2 hours, and was due to get back in bed soon, so she had hoped I would get there before they moved her. I also noticed that she wasn't on the ventilator but taking a page from Michelle's theory ("If you don't tell her, she won't panic"), I didn't point this out to her.
A few minutes after I arrived, the CNA came to move her back to bed, and when I stepped out of the room to let him do his thing, I ran into Michelle (our favorite respiratory therapist). She told me that aunt I had been doing so well, that the pulmonary doctor had placed orders for her to be off the vent for a half-hour "or as tolerated." That meant that if Michelle felt aunt I could stay off longer, she could keep her off. When I asked Michelle if aunt I knew she was off the vent, she said she did - and hadn't panicked at all. She asked for a little bit of the anti-anxiety meds, but had been fine. By the time Michelle put her back on the ventilator, aunt I had been off completely for 2 hours and 15 non-panicking minutes. Aunt I was SO proud of herself; that's why there's such a big smile on her face in the attached photo. I am so very proud of her, too. And to think I almost didn't go today to see this. She still has a long, tough road ahead of her to get strong enough, but I think she'l get there. She said this when this whole thing started and she's right: she's one tough cookie.
Dad's also doing quite fine. The visiting nurse came around yesterday and replaced his pressure bandage with a small gauzy bandage. If the small bandage was dry today, he'd get the go-ahead to take a shower. She came, she checked, he passed! She'll come back Thursday or Friday, then once again next week before he sees the surgeon on 7/24 for a wound check. Dad's still got a fair amount of bruising, but the swelling has gone down quit a bit and he didn't need any pain meds today.
Which means... We've started the "Meg comes home" countdown! I'm taking a late afternoon flight next Monday, July 20, and will be back on terra-very-Califirma around 10:00 that night. (But who's counting...?) OMG, I so need to get home and recharge myself.
Thank you again, everyone, for all your kind words and good thoughts. They've all paid off, in spades. (Keep sending them Florida way, though - none of it is wasted!)
Friday, July 10, 2009
Just saw dad; looking good. A little sore, achey, but doing okay. Ann is with him, I'm heading down to see aunt I now.
Thursday, July 9, 2009
Aunt I passed her swallow test and is now allowed to drink thin liquids and eat pureed food! AND they can deflate her trach so she can talk. We heard her!
Wednesday, July 8, 2009
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