Saturday, April 30, 2011
Fun Fact
Ernest Vincent Wright wrote the fifty-thousand-word novel Gadsby without any word containing "e."
Friday, April 29, 2011
There's No Place Like Home
We arrived yesterday around 3pm. Leaving the hospital was like coming home with a newborn; "They're letting me take this guy home? I'm now responsible for his care? Yikes!"
We arranged for a hospital bed in he parlor, where he sleeps soundly as I type. It's great to have him home. He is relieved to be here.
It must be very odd after so long away. And then there's his condition...
So I've said we took a step backward - I talked about the dumbs and the headaches. I will do my best, here, to describe what's going on.
Saturday morning (I wasn't there), Ian became unable to "find is words" and had a stat MRI. In this and subsequent scans, nothing has shown different, worse, anything. The reasons for his symptoms now are deemed purely metabolic; all we can do is ensure he is properly rested, hydrated and medicated and wait for this to pass.
The good news is:
- he has had few if any headaches since coming home... and that's after a steady few days of searing ones. He gets them from positional change, and I'm sure some of you migraine sufferers can relate to that.
- he is happy to have visitors*
- his at-home therapy will start soon (perhaps today -- I'm waiting for a call)
- the kids are happy to have Daddy back
The difficult news is:
- we have no idea how long this "setback phase" will last. There was no prediction of its onset, and so therefore no prediction for its passing. If you've been with a stroke patient, you know what a struggle it is for HIM to communicate, and for ME to be patient, interpret, understand, take action. Something like, "How was your day at school, Audrey" sounds like "how... is... is... how... you... how... at... the... place... where... place... how... today?"
- I am on overdrive, taking care of 2 kids and Ian. I have to keep track of his intake of food, fluids, meds. I have to escort him to the bathroom or empty his urinal. I have to take care of all the regular household duties and I have a few at-home paid jobs to do in the meantime to contribute financially.
*In addition to being the mom, chauffeur, dietitian, chef, maid, nurse, I am also the wizard: Nobody gets to see the patient, no way, no how, UNLESS it's arranged through me. PAH-LEASE don't show up unannounced, even if it's to drop off cookies; if my front door is open, the storm door will reveal your presence to the kids, and there will be a flurry of activity that may wake Ian, cause him to be interrupted in eating something (which is also a challenge) or interrupt me in one of a series of important tasks. Ian is happy to have visitors; it cheers him! We welcome them! We just need warning. I've been gracious to visitors thus far; don't make me shake the can of you-know-what and spray y'all because I. WILL. DO. IT. You won't like me when I'm angry.Tuesday, April 26, 2011
Drat.
Foiled again.
I stayed at the hospital last night, intending to scoop him up and take him home this morning. Unfortunately he has an off-and-on killer headache and a case of the "dumbs" -- the seizure-like symptoms of not being able to bring words to mind or articulate phrases or thoughts. Concerning, frustrating, and enough of a disturbance to keep him here an extra day for observation. He had an MRI, EEG, and the gamut of blood work -- all showing things to be "normal" and nothing of concern. So now it's more observation, pain meds as needed, and some preventative headache/seizure med changes. (for those of you familiar, Topamax is the likely candidate).
What now? home tomorrow, perhaps. However, since he could be tomorrow the way he is today, it could be more of a cloistered day in the bed as opposed to a fresh-air day on the porch. Well, we'll just to have to play it by ear, one day at a time, as is our custom.
The good news: trach is out, sleep is sound, he's able to lie flat. He is back on food (with limitations and alterations).
Prayers: That this is temporary. Even if it's long-term temporary, that the dumbs resolve, the pain subsides, and the other therapy progresses as it has been. That he's able to feel the prayers, that they lift his spirits when he gets frustrated (he's much more likely to become angry and depressed at not being able to say something he's thinking, or come up with the correct word, than he is that his foot won't do what he wants it to do).
Mental and psychological endurance for me; I'm entering the care-giving stage.
Patience for the kids; dad can't toss the ball or pick them up. Probably can't read any stories. That will be disappointing at best, distressing at worst.
Support: I have no idea what things will look like going forward; we will have in-home therapy for a bit, then out patient. That will mean taxi service, perhaps, or child sitting while I taxi, or a little of both. Follow-up appointment(s) with surgeon and misc. specialists. Not sure his tolerance for the everyday goings-on of children, so they might need some playdates; the good news is we're coming up on good playing-outside weather.
I stayed at the hospital last night, intending to scoop him up and take him home this morning. Unfortunately he has an off-and-on killer headache and a case of the "dumbs" -- the seizure-like symptoms of not being able to bring words to mind or articulate phrases or thoughts. Concerning, frustrating, and enough of a disturbance to keep him here an extra day for observation. He had an MRI, EEG, and the gamut of blood work -- all showing things to be "normal" and nothing of concern. So now it's more observation, pain meds as needed, and some preventative headache/seizure med changes. (for those of you familiar, Topamax is the likely candidate).
What now? home tomorrow, perhaps. However, since he could be tomorrow the way he is today, it could be more of a cloistered day in the bed as opposed to a fresh-air day on the porch. Well, we'll just to have to play it by ear, one day at a time, as is our custom.
The good news: trach is out, sleep is sound, he's able to lie flat. He is back on food (with limitations and alterations).
Prayers: That this is temporary. Even if it's long-term temporary, that the dumbs resolve, the pain subsides, and the other therapy progresses as it has been. That he's able to feel the prayers, that they lift his spirits when he gets frustrated (he's much more likely to become angry and depressed at not being able to say something he's thinking, or come up with the correct word, than he is that his foot won't do what he wants it to do).
Mental and psychological endurance for me; I'm entering the care-giving stage.
Patience for the kids; dad can't toss the ball or pick them up. Probably can't read any stories. That will be disappointing at best, distressing at worst.
Support: I have no idea what things will look like going forward; we will have in-home therapy for a bit, then out patient. That will mean taxi service, perhaps, or child sitting while I taxi, or a little of both. Follow-up appointment(s) with surgeon and misc. specialists. Not sure his tolerance for the everyday goings-on of children, so they might need some playdates; the good news is we're coming up on good playing-outside weather.
Saturday, April 23, 2011
Fun Fact
The name for Oz in The Wizard of Oz was thought up when the author, L. Frank Baum, looked at his filing cabinet and saw A-N and O-Z, hence Oz.
Friday, April 22, 2011
Monday, April 18, 2011
Sunday, April 17, 2011
Dear Blog Stalker(s): Update, April 17
Hello, friend.
Have youobsessively routinely been checking for updates here? If so, I do apologize. These days have turned into the "daily drag" of victories, setbacks, and steady, snail-steps forward (Wait, snails don't step, do they? Hmm.).
When we last left our hero, he was working hard, feeling better and going out on the town.
Not sure if the previous virus was just that or the beginning of pneumonia, but no matter; he has the latter now and is back on the IV antibiotic chasers. (We are not sure of the cause, but it's possibly a result of aspiration from attempts at eating and drinking.) As a result, he has been relegated to tube feeds only; a bummer after previous culinary excursions. Also pushed back (I'm full of asides today, but it always irritates me, that phrase "pushed back" -- it seems to me that if you're looking at a calendar, the way MY mind operates (visually) that moving something to a LATER date would be pushing it FORWARD. Am I alone here? I digress.) is the removal of his trach, which was tentatively scheduled for earlier last week. No dice; they want his lungs all healthy before they go fussing with that. Bummer.
His coughing and .... ahem... that WORD ... is MUCH less. I stayed the night Friday and he got a ton more contiguous sleep (save the &*@#&^ IV machine's beeps and the nurse's inability to make it stop) than he has in weeks.
His balance has improved. His right side is still tingling/numb and his right hand lacks quite a bit of strength and fine motor skill. We are not sure how much, if any, of normal function on that side will return, but what we DO know is that it has significantly improved since before surgery. It's possible that the brain stem sustained permanent damage from the bleeding event, and it's (just as?) possible that as blood ebbs and swelling decreases that more improvements will come. We just don't know.
As far as his return home: WE DON'T KNOW (common theme). At this point the plan will be to have him come home, as opposed to a closer, in-patient rehab facility. But seeing as he still has a trach and feeding tube, and now pneumonia ... the timing of all things is uncertain. We just do the day-at-a-time deal.
Prayers: healing from the lung cruds. Continued (encouraging) steps forward. Trach removal at the earliest possible time, and stronger swallowing function. If he can get the trach out, chances are the swallowing (and even chances for combating pneumonia?) will improve. Then the feeding tube can go ... It's kind of an "if-then cycle".
I will endeavor to keep you posted on a more regular basis this week. In the meantime, prayers on warming up the weather and calming the winds wouldn't be a bad thing, either!
Have you
When we last left our hero, he was working hard, feeling better and going out on the town.
Not sure if the previous virus was just that or the beginning of pneumonia, but no matter; he has the latter now and is back on the IV antibiotic chasers. (We are not sure of the cause, but it's possibly a result of aspiration from attempts at eating and drinking.) As a result, he has been relegated to tube feeds only; a bummer after previous culinary excursions. Also pushed back (I'm full of asides today, but it always irritates me, that phrase "pushed back" -- it seems to me that if you're looking at a calendar, the way MY mind operates (visually) that moving something to a LATER date would be pushing it FORWARD. Am I alone here? I digress.) is the removal of his trach, which was tentatively scheduled for earlier last week. No dice; they want his lungs all healthy before they go fussing with that. Bummer.
His coughing and .... ahem... that WORD ... is MUCH less. I stayed the night Friday and he got a ton more contiguous sleep (save the &*@#&^ IV machine's beeps and the nurse's inability to make it stop) than he has in weeks.
As far as his return home: WE DON'T KNOW (common theme). At this point the plan will be to have him come home, as opposed to a closer, in-patient rehab facility. But seeing as he still has a trach and feeding tube, and now pneumonia ... the timing of all things is uncertain. We just do the day-at-a-time deal.
Prayers: healing from the lung cruds. Continued (encouraging) steps forward. Trach removal at the earliest possible time, and stronger swallowing function. If he can get the trach out, chances are the swallowing (and even chances for combating pneumonia?) will improve. Then the feeding tube can go ... It's kind of an "if-then cycle".
I will endeavor to keep you posted on a more regular basis this week. In the meantime, prayers on warming up the weather and calming the winds wouldn't be a bad thing, either!
Subscribe to:
Posts (Atom)