Sunday 19 September 2010
Final entry
Now that our Kay has departed I will not update this blog anymore. Marion & I will update our own blogs (see links right) with details of funeral arrangements, etc. We are missing the addresses of many people with whom we have had contact via the blog. We'd like to send you all a remembrance of Kay, so please send your contact details to Marion at howe dash family dot org or Robert at howe dash family dot org. I wrote our email address like this to prevent spamming.
Saturday 18 September 2010
Bedtime Thought
The number of candles burning around the world for Kay means that we'll soon have to apply for a carbon emissions license and buy in quota from some green minded power plant. This could get expensive.
:-)
Nite Nite.
:-)
Nite Nite.
Pattern of the Days
It seems that Kay is determined to start our days with a big scare and finish them quietly. At least, this has been the pattern of the last days. Marion has proposed a solution to this apparent problem. She has determined that Kay doesn't like being left alone at night, so she's proposing to sleep on the plastic garden chair in Kay's IC room.
I'm dead set against this idea, Marion is already on her nth pair of last legs and losing more sleep seems to me likely to result in me ending up with two patients. (Sorry, but this time I am thinking of myself). At the moment we have reached a compromise which is that she will stay with Kay until midnight and then come to bed. But do I trust her? Hmmm... We'll have to see.
Kay is stable with reasonable blood gas figures. Feeding into her small intestine has now reached a volume where intravenous feed has been stopped. Due to the heparin used to protect the dialysis filter, Kay has developed some very nasty looking hematomas (bruises/bleeds) on her body. The heparin has now been stopped, so it is likely that the dialysis filter will quit shortly. When this happens, dialysis will be stopped and we'll see whether Kay's kidneys can do the work. So far they have been doing a good job the last days.
The most bone marrow toxic medications were stopped yesterday in preparation for the bone marrow boost. This should also help her bone marrow to recover more quickly. The risk is that the CMV virus will gain ground, but we think that the alternative medication worked better anyway (but I'm learning that I'm wrong about 95% of the time with these kinds of things).
Anyway, I'm off to bed. Tonight is an exciting night. By special arrangement we can sleep in real beds. I'm hoping to count a lot more sheep... and spend more time with Kay in my dreams.
I'm dead set against this idea, Marion is already on her nth pair of last legs and losing more sleep seems to me likely to result in me ending up with two patients. (Sorry, but this time I am thinking of myself). At the moment we have reached a compromise which is that she will stay with Kay until midnight and then come to bed. But do I trust her? Hmmm... We'll have to see.
Kay is stable with reasonable blood gas figures. Feeding into her small intestine has now reached a volume where intravenous feed has been stopped. Due to the heparin used to protect the dialysis filter, Kay has developed some very nasty looking hematomas (bruises/bleeds) on her body. The heparin has now been stopped, so it is likely that the dialysis filter will quit shortly. When this happens, dialysis will be stopped and we'll see whether Kay's kidneys can do the work. So far they have been doing a good job the last days.
The most bone marrow toxic medications were stopped yesterday in preparation for the bone marrow boost. This should also help her bone marrow to recover more quickly. The risk is that the CMV virus will gain ground, but we think that the alternative medication worked better anyway (but I'm learning that I'm wrong about 95% of the time with these kinds of things).
Anyway, I'm off to bed. Tonight is an exciting night. By special arrangement we can sleep in real beds. I'm hoping to count a lot more sheep... and spend more time with Kay in my dreams.
Back to Yesterday
Kay's state seems to have stabilised at around the same level as yesterday afternoon, before she was switched onto self-triggered ventilation. The last blood gas showed that O2 was good but CO2 still too high. Next blood gas at 6pm.
I forgot to mention that her CRP this morning was about 15% worse than yesterday and still high. Her chest xray was no better than yesterday.
In the meantime we have stood down from an active Alarm Phase 2. (Definition: phase 2 I SMS immediate friends and family that Kay's situation has taken a turn for the worse. Phase 1, I press the panic button and phone them. Tuesday evening was Phase 1)
I thought that Marion looked as though she'd been put through the mangler this afternoon. Then I went and had a shower and saw myself in the mirror... Could probably get a role in the remake of the Thriller video. When we're through this I plan to spend some long afternoons snoozing in bed with Kay.
How's it going, fish?
I forgot to mention that her CRP this morning was about 15% worse than yesterday and still high. Her chest xray was no better than yesterday.
In the meantime we have stood down from an active Alarm Phase 2. (Definition: phase 2 I SMS immediate friends and family that Kay's situation has taken a turn for the worse. Phase 1, I press the panic button and phone them. Tuesday evening was Phase 1)
I thought that Marion looked as though she'd been put through the mangler this afternoon. Then I went and had a shower and saw myself in the mirror... Could probably get a role in the remake of the Thriller video. When we're through this I plan to spend some long afternoons snoozing in bed with Kay.
How's it going, fish?
DNR Status Revised Downwards
Kay was already dnr for some situations. The rules have now been formally changed so that she's dnr for more situations. You can read something into that I think.
She has been put back on a controlled breathing program. Her blood gases have stabilised at more acceptable levels. But she's back to needing high ventilation pressures. Thus the risk of blowing a lung, thus the change in dnr status to "do nothing if she blows a lung".
Again, we're terrified, the electricity of fear coursing through my body. But we continue to feel that Kay's still fighting and as long as she's doing it, we can do it too.
On the plus side, her white cell count rose today and her red cell count remained stable. The white cell count is not of any great signficancce, yet. But the fact of an increase is not negative.
To be realistic, she has a very small chance of pulling through. But we're willing her on and on. I put my head against her head and pour all the energy and will power I have into her. Maybe it's like a fish trying to change the direction of an oil tanker, but I'm doing my best / we're doing our best and maybe, just maybe, it will make a difference. Hopefully it will end up being a fractal effect, a small change having large (positive) consequences.
The more fishes there are, the more chance of changing the direction of the oil tanker.
She has been put back on a controlled breathing program. Her blood gases have stabilised at more acceptable levels. But she's back to needing high ventilation pressures. Thus the risk of blowing a lung, thus the change in dnr status to "do nothing if she blows a lung".
Again, we're terrified, the electricity of fear coursing through my body. But we continue to feel that Kay's still fighting and as long as she's doing it, we can do it too.
On the plus side, her white cell count rose today and her red cell count remained stable. The white cell count is not of any great signficancce, yet. But the fact of an increase is not negative.
To be realistic, she has a very small chance of pulling through. But we're willing her on and on. I put my head against her head and pour all the energy and will power I have into her. Maybe it's like a fish trying to change the direction of an oil tanker, but I'm doing my best / we're doing our best and maybe, just maybe, it will make a difference. Hopefully it will end up being a fractal effect, a small change having large (positive) consequences.
The more fishes there are, the more chance of changing the direction of the oil tanker.
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