Michael is definitely feeling better, progressing very well, despite as he puts it, "feeling run over by a large truck". Yes, apparently it's possible to feel "better" and yet also "hit-by-truckish" at the same time. Me .... not so much so.That truck may have sideswiped me on the way past. More in a minute.
As mentioned earlier in his and my posts, the patient desperately wants out of the house and to not be a "bump on a log" (not to be confused with "ants on a log" - a term & creation Michael was unaware of until last night when I explained). Sooooo .... shopping, malls, errands, and driving hither and yon it is. I may have erred in my county count in that earlier post -- I thought a few places where in different counties and Michael has corrected me (damn Yahoo Maps). But no worries, we'll probably hit all those counties soon anyway as he looks for more different places to go to walk and be "out". We've already gone to the Promenade in Saucon Valley on a near daily basis, hit the Lehigh Valley Mall twice (which is two more times than in the last 5 years combined), the mall at King of Prussia, and now also the Montgomery Mall. Plus Target, BJ's, Giant, Wegman's, Fresh Market -- all on regular basis. We're running out of grocery stores to try out.
And while we've been out, we've been trying to do a favor for my best buddy who lives in Ohio, and whose cute little 6-year old stepson has apparently become a Villanova Wildcat basketball fan. They have no connection to Nova, no idea how this started, but every time he hears or sees them on ESPN he goes nuts. So, since we live in Wildcat (of that blue persuasion -- not to be confused with my beloved purple Wildcats or the dreaded other blue Wildcats I grew up hating) country, we've been looking for some promised Nova gear in youth sizes. This has been a bit surprisingly more of a challenge than I thought -- but probably because our first forays were up closer to the Lehigh Valley and out of the core fan area for Nova. At the very least I figured, hey, I know where Nova's campus is and it's not that far, I can always go to the darn bookstore!
But we had great success yesterday so all is good.
But that was part of a series of errands that started with M getting me up early so we could go show community support and eat a $5 pancake breakfast at the local high school for the football team (not bad -- I've had much worse pancakes that cost more), then we drove to the Montgomeryville area (to our south), hit the mall, did his walking, did the shopping, and were on our way back home before noon. He also wanted to see a movie, have lunch and maybe dinner out, back up at Saucon (to our north). And at this point I hit the wall. Said movie would have to be later because I needed a nap --- NOW.
I've been feeling run down and a bit ragged lately. Been doing the dreaded java. Also advil and hot tea to try to knock out my sore throat. And Friday night I just didn't sleep well at all. More like a baby -- you know, up every two hours and cried. HA! Seriously though, up every 2 hours, and always thinking it had to have been 6 hours later instead. Very turned upside down-ish. So I took a nap of epic proportions -- would best that of any of my 2 1/2 year-old nephew. Felt a little more human. And we went to the movies (our 2nd of the week) and had a very nice early-ish dinner at Italian-inspired restaurant up at Saucon. Came home and was nodding off checking email at 9pm, so I went and crashed at what must be a record-early time for me and apparently hours before Michael. [ok, so I didn't fall asleep until 10:30 -- but that's still a record!] We have some things backward here in the patient-caretaker roles at the moment!
But I feel a bit more human this morning .. up early again to tackle the long list of activities for the day and driving all over the county. I really should get one of those black chauffeur hats to go with my black coat and our dark vehicles with the tinted windows in which I schlep -- I mean "drive" -- my dear beloved charge!
Peace
J
Sunday, January 31, 2010
Friday, January 29, 2010
Barware issues solved
J
Thursday, January 28, 2010
Shop til he drops .... well, not quite
The one major problem as I foresaw it with surgery in January, was that, well, it was JANUARY. And we do not live in Florida, Arizona, or California. Although to be fair to those fine states, they've had some really really crappy early winter weather. So coming home post-surgery was going to be to iffy weather likely and orders for the patient to walk much, often, short bursts, keep it moving, and all that. We do live on a cul-de-sac, so normally it's ideal and he could just do laps around and around and around. Like all the mommies and doggies.
Except, as noted, it's January and sending the new heart patient outside in potentially crappy, not to mention dangerous or lethal, weather is not a good NJFW thing to do. So, we find alternate locales.
As Michael has noted today on his blog that means traveling to at least 3 different counties for different malls, shopping centers, places to run errands, buy stuff, look at stuff or whatever -- 4 or 5 counties if we count our own and the one with the other shopping and errands we've done lately. Maybe we'll find ourselves in Center City soon and can add yet another county on the Michael Rehab World Tour. My family and friends in other parts of the country will likely read this and shake their heads -- as they can not fathom driving, regularly, 45 min to and hour-plus for errands, restaurants, shopping, etc and traversing such distances or geographies. Growing up in KY if you were driving 45 miles people would really wonder what on earth you found so fascinating out in the middle of nowheresville Bullit County, or all the way in Frankfort, or worse -- somewhere else in between where there's nothing but cows or trees or whatever - probably not even a good truck stop. It's just different out here on the East Coast where it's one giant suburb from about Connecticut to Virginia.
And no, he has not bought things at every stop or every mall. He's much too good and disciplined for that. Me on the other hand, I have a book problem. It is practically physically impossible for me to walk into and out of a bookstore without purchasing something. Despite my latest and greatest toy and one of the damn fine niftiest [go away Apple! take your messiah tech complex with you -- and your sway over my husband and friends!] gifts ever -- a Kindle for Xmas -- I still have a paper published product problem.
And a growing java problem. No no no no!!! I have fallen so far, so fast, to the dark side of caffeine. Many days now, consecutively, or at least in near proximity, and even from multiple purveyors! Damn you lattes, damn you!
But at least I'm finally sleeping a bit better -- waking up less, sleeping longer at one stretch, and sometimes almost normal people hours. Maybe eventually I'll be caught up. (HAH!) And maybe I'll eventually shake this perpetual, almost-not-quite-but-trying-to-be-a cold. The tickly throat, ever so slight cough, and general near malaise-ish feeling that's been around since we were in Cleveland persists but hopefully stays low-grade and can be beaten back with Advil. and hot tea. and maybe even the java??
Peace
Jenn
Except, as noted, it's January and sending the new heart patient outside in potentially crappy, not to mention dangerous or lethal, weather is not a good NJFW thing to do. So, we find alternate locales.
As Michael has noted today on his blog that means traveling to at least 3 different counties for different malls, shopping centers, places to run errands, buy stuff, look at stuff or whatever -- 4 or 5 counties if we count our own and the one with the other shopping and errands we've done lately. Maybe we'll find ourselves in Center City soon and can add yet another county on the Michael Rehab World Tour. My family and friends in other parts of the country will likely read this and shake their heads -- as they can not fathom driving, regularly, 45 min to and hour-plus for errands, restaurants, shopping, etc and traversing such distances or geographies. Growing up in KY if you were driving 45 miles people would really wonder what on earth you found so fascinating out in the middle of nowheresville Bullit County, or all the way in Frankfort, or worse -- somewhere else in between where there's nothing but cows or trees or whatever - probably not even a good truck stop. It's just different out here on the East Coast where it's one giant suburb from about Connecticut to Virginia.
And no, he has not bought things at every stop or every mall. He's much too good and disciplined for that. Me on the other hand, I have a book problem. It is practically physically impossible for me to walk into and out of a bookstore without purchasing something. Despite my latest and greatest toy and one of the damn fine niftiest [go away Apple! take your messiah tech complex with you -- and your sway over my husband and friends!] gifts ever -- a Kindle for Xmas -- I still have a paper published product problem.
And a growing java problem. No no no no!!! I have fallen so far, so fast, to the dark side of caffeine. Many days now, consecutively, or at least in near proximity, and even from multiple purveyors! Damn you lattes, damn you!
But at least I'm finally sleeping a bit better -- waking up less, sleeping longer at one stretch, and sometimes almost normal people hours. Maybe eventually I'll be caught up. (HAH!) And maybe I'll eventually shake this perpetual, almost-not-quite-but-trying-to-be-a cold. The tickly throat, ever so slight cough, and general near malaise-ish feeling that's been around since we were in Cleveland persists but hopefully stays low-grade and can be beaten back with Advil. and hot tea. and maybe even the java??
Peace
Jenn
Monday, January 25, 2010
Odd things happen at home too apparently
No lie, I swear.
At 10pm tonight our doorbell rang. Now, perhaps M & were fools to answer the door at that time of night. But call us curious - because hardly anyone EVER rings the doorbell, and if it was some kid or prank I'd chew 'em out, but what if it was a neighbor in trouble? We live in a very small development, a cul-de-sac, so it's possible somebody needed help or something. Not that we'd likely be anyone's first, second or even third choice around here -- we just don't know anyone well.
But nope -- it was some guy dressed up in a full on 6 foot tall Gumby costume. Really.
And get this .....
He claims to have been selling pillows.
The deaf chick asked M "what? huh?" because that just can't be right -- but no, he says that's what the guy said, and he went off politely and quietly when we declined to buy pillows from Gumby dude at 10 o'clock in the friggin' evening.
Huh ...
At 10pm tonight our doorbell rang. Now, perhaps M & were fools to answer the door at that time of night. But call us curious - because hardly anyone EVER rings the doorbell, and if it was some kid or prank I'd chew 'em out, but what if it was a neighbor in trouble? We live in a very small development, a cul-de-sac, so it's possible somebody needed help or something. Not that we'd likely be anyone's first, second or even third choice around here -- we just don't know anyone well.
But nope -- it was some guy dressed up in a full on 6 foot tall Gumby costume. Really.
And get this .....
He claims to have been selling pillows.
The deaf chick asked M "what? huh?" because that just can't be right -- but no, he says that's what the guy said, and he went off politely and quietly when we declined to buy pillows from Gumby dude at 10 o'clock in the friggin' evening.
Huh ...
Friday, January 22, 2010
Remedial driver's ed hereby ordered for all of our county!
Ya know, I have one main job here as Nurse Jane Fuzzy Wuzzy -- take care of the patient.
Now, he's pretty self-sufficient (much more so than I ever expected -- overachiever that he is I'm sure he feels he's pretty much on track), and he can take care of most of his own needs and doesn't have so much in the way of any truly 'nursey' type duties needed. So I'm more cook, chauffeur, errand person, secretary -- that sort of thing. [That can be a whole other post] Hey, whatever is needed, it's all good -- and all in the written contract I'm pretty sure I signed way back in June of 1998. ;-)
BUT ... if one of main goals is taking care of patient, and part of that is keeping patient safe, then I hereby declare that the rest of our county in PA needs remedial driver's ed. RIGHT NOW! Especially the upper, north-north-west part of the county. Holy crap! Everywhere I drove today it was like they were out to get me. I turned off the main street of town, down a side street to take him to the hospital for a scheduled follow-up with his doc, and first we come right up against a semi stopped blocking the street. So I cautiously wait behind truck, looking to see when safe to move left and go around -- but first zooms up & around another SUV ... ok, I start to go again ... but behind him barreling down the short block is .... a giant bulldozer with one of those sharp, plow looking fronts [or perhaps it was one of these WTF - it had big tires, was yellow & had a blade! ] . So I back off again, wait, try again to get around, the road is finally clear I pull out to pull around ... and now the damn semi with its hazards still blinking starts to move and pulls back out into the middle of the short little side block. ACK! I'm trying to get the patient to a routine follow-up at a hospital not 4 minutes away and if this keeps up we're gonna be going there in the red truck with the sirens!
And it kept up like that all day with drivers coming at me funny in parking lots, backing out at weird times, cutting the wrong way, getting indecisive at stop signs and turns, odd speed and diving on the highway, and on and on. I'm not having good "Carma" today obviously.
Capped off by having my own car towed out of my own driveway because it's pissed at me for going away, leaving it, not driving it for nearly a month and favoring the other car upon our return b/c M can get in/out of its backseat easier -- so it decided to not start, or start reluctantly and with burned smells and smoke wisping out of its a$$. See ... bad "carma" -- spelling puns intended.
Now, he's pretty self-sufficient (much more so than I ever expected -- overachiever that he is I'm sure he feels he's pretty much on track), and he can take care of most of his own needs and doesn't have so much in the way of any truly 'nursey' type duties needed. So I'm more cook, chauffeur, errand person, secretary -- that sort of thing. [That can be a whole other post] Hey, whatever is needed, it's all good -- and all in the written contract I'm pretty sure I signed way back in June of 1998. ;-)
BUT ... if one of main goals is taking care of patient, and part of that is keeping patient safe, then I hereby declare that the rest of our county in PA needs remedial driver's ed. RIGHT NOW! Especially the upper, north-north-west part of the county. Holy crap! Everywhere I drove today it was like they were out to get me. I turned off the main street of town, down a side street to take him to the hospital for a scheduled follow-up with his doc, and first we come right up against a semi stopped blocking the street. So I cautiously wait behind truck, looking to see when safe to move left and go around -- but first zooms up & around another SUV ... ok, I start to go again ... but behind him barreling down the short block is .... a giant bulldozer with one of those sharp, plow looking fronts [or perhaps it was one of these WTF - it had big tires, was yellow & had a blade! ] . So I back off again, wait, try again to get around, the road is finally clear I pull out to pull around ... and now the damn semi with its hazards still blinking starts to move and pulls back out into the middle of the short little side block. ACK! I'm trying to get the patient to a routine follow-up at a hospital not 4 minutes away and if this keeps up we're gonna be going there in the red truck with the sirens!
And it kept up like that all day with drivers coming at me funny in parking lots, backing out at weird times, cutting the wrong way, getting indecisive at stop signs and turns, odd speed and diving on the highway, and on and on. I'm not having good "Carma" today obviously.
Capped off by having my own car towed out of my own driveway because it's pissed at me for going away, leaving it, not driving it for nearly a month and favoring the other car upon our return b/c M can get in/out of its backseat easier -- so it decided to not start, or start reluctantly and with burned smells and smoke wisping out of its a$$. See ... bad "carma" -- spelling puns intended.
Thursday, January 21, 2010
New time 'zone'
I've been slacking here now that we've returned to 'normal' life ... or our new 'normal'. I have also been trying, and often failing, to adjust to living in our new time zone. I am now trying to be on MST.
"Michael Standard Time".
[other alternate names considered: GMT (goshdarnearly Michael time), WMT (why-am-i-up Michael time), or any other variation on the same]
See, as I think I've mentioned before, I'm a night owl. I was born at night, my first waking hours were at night, I've always been good and alert at night, and grad school just returned me to this natural circadian rhythm my body has wanted for years -- to be a bat. So I do late nights, and late mornings and I have never ever been an early riser, or particularly good in the mornings. What can I say, working in the corporate world was hell for this reason alone.
Nevertheless, this is not a state I can live in during caretaking time, nor could I really manage it during the holidays, our travels, the time in Cleveland, etc. Too darn many of those 4:00-hour a.m. wake-up calls, early flights, early hospital appointments, etc. So I've been trying to adapt. Hence (probably) my fall from grace and wooing over to the dark side as my friends Jay & Sean have called it (quite maniacally gleefully I might add. hmmmm). I've been trying to be up early, get up when the alarm actually goes off, when Michael is up, and pretend to be a normal person. This was jump-started on the weekend of all godforsaken times when M had me up before 8am I believe on both days. The weekend is no longer sacred!! Ugh. I have regressed earlier this week, sleeping in past 9 and through my alarm unfortunately, and even missing a wanted aqua class. Darn. And this has resulted in sequential days of Starbucks visits for nonfat caramel lattes. [Darth Vader music & rasps ... "Luke, I AM your father/caffeine" Me: "Noooooooo!"]
Stay tuned to see if this results in a more permanent re-setting of my circadian rhythms or if I regress to my dark hours, and how well can I keep up with the patient and his preferred hours.
"Michael Standard Time".
[other alternate names considered: GMT (goshdarnearly Michael time), WMT (why-am-i-up Michael time), or any other variation on the same]
See, as I think I've mentioned before, I'm a night owl. I was born at night, my first waking hours were at night, I've always been good and alert at night, and grad school just returned me to this natural circadian rhythm my body has wanted for years -- to be a bat. So I do late nights, and late mornings and I have never ever been an early riser, or particularly good in the mornings. What can I say, working in the corporate world was hell for this reason alone.
Nevertheless, this is not a state I can live in during caretaking time, nor could I really manage it during the holidays, our travels, the time in Cleveland, etc. Too darn many of those 4:00-hour a.m. wake-up calls, early flights, early hospital appointments, etc. So I've been trying to adapt. Hence (probably) my fall from grace and wooing over to the dark side as my friends Jay & Sean have called it (quite maniacally gleefully I might add. hmmmm). I've been trying to be up early, get up when the alarm actually goes off, when Michael is up, and pretend to be a normal person. This was jump-started on the weekend of all godforsaken times when M had me up before 8am I believe on both days. The weekend is no longer sacred!! Ugh. I have regressed earlier this week, sleeping in past 9 and through my alarm unfortunately, and even missing a wanted aqua class. Darn. And this has resulted in sequential days of Starbucks visits for nonfat caramel lattes. [Darth Vader music & rasps ... "Luke, I AM your father/caffeine" Me: "Noooooooo!"]
Stay tuned to see if this results in a more permanent re-setting of my circadian rhythms or if I regress to my dark hours, and how well can I keep up with the patient and his preferred hours.
Sunday, January 17, 2010
Odd sights
Been meaning for a while to recount some of the odder things we (ok, mostly me since you-know-who wasn't exactly wandering the hospital much) saw while we were out in Cleveland. Some are just "huh, interesting" moments but the capper was a doozy of head-scratching.
Peace
J
- Late one evening, maybe after I was leaving him in first night of ICU and waiting down in lobby for my parents to be my 'taxi' I thought I saw their honkin' huge white SUV pull up but then realized it had black on it too. Was one of the Clinic's own Police 'cruisers' (or maybe a regular Cleveland one, they looked similar). And next in the door was a bunch of doctors in winter coats and scrubs -- and one pulling a blue Igloo cooler. Now, at a heart hospital you just know that guys in scrubs carrying a cooler aren't hauling six-packs of Bud Lite! It was the transplant team back from a 'harvest'. Even heard another doctor just getting off the elevators ask in doc shorthand, "Viable?" -- wondering whether it was a good heart. I didn't get to hear the response as they headed up. I do know that there was at least one other patient on M's step-down floor who was a transplant patient.
- Another night, again waiting in the lobby, probably again for my parents to be my ride ... I saw this well-dressed, very well-coiffed, distinguished looking guy in a black topcoat come striding in towards the elevators up to step-down.... carrying no less than 8 identical , brand new, Elmo dolls. Huh. [Not sure which Elmo either -- just large Elmo boxes -- lots of 'em] There's no maternity ward in this section. This wasn't even the entrance to the Children's hospital. So no idea who was getting all those Elmos at 11pm.
- Every one of those late nights waiting for either the Clinic's free shuttle or the Burke free shuttle, I saw the same large guys in black topcoats, most were bald (of the I-shave-because-I-look-tough-kind), kinda big and buff looking. And all sported either discreet, or not so much so, walkie talkies, as well as other electronics and small computers. Thinking they were private security for some patient, possibly the ones who get to stay on the special suite floor [apparently for big wigs or "executive patients"] up near the roof. Of course if the Suits were downstairs, who was with the patient and how many Suits did this person need? Was interesting to play guessing games. Oh, also saw a parade of identical limos outside the nicer of the hotel restaurants one night -- all with the same vanity tags "Shima __" and a number, saw #s 10, 12, 9, 21, 22, 13. Guess that's where the Suits' other people were staying? or the guy with the Elmo dolls?
- I'm not even really counting the 437 people I saw, including way too many Clinic docs, nurses and staff, doing the look that is oh-so-not-as-cool-as-you-think-it-is of stuffing their pants down their boots. Every variety of Ugg or just Ugly boot there is, and the biggest offenders gotta be the nurses in their scrubs and whites with the pants stuck down in the black or other dark giant fluffy, scruffy, puffy, furry boots. Looked like marmots attacking the feet of many many women.
- M was out of the hospital, we were trying to head out of the hotel to escape the campus boundaries for dinner on our 2nd to last night, and thought we had caught the down elevator from our hotel. But nope, we wound up making unscheduled stops. Good thing too, or we would've missed the best sight of all. Doors open and in step two huge guys, again of the I'm-bald-because-I-want-to-be-and-I-can-bench-your-car-look. Except they weren't just kinda tough looking. They were sporting armor. Not police type body armor, I mean King Arthur, Lancelot, Black Knight, let's-go-storm-the-castle-boys, ARMOR!! They had on chain mail down their legs, hauberks, boots, breast plates, carrying swords and more armor kind of armor. Now where on earth were two would-be knights going at 7pm in the middle of January, in Cleveland, and at a hotel that is specifically connected to the Cleveland Clinic?? I know I was told this was a crappy neighborhood, but c'mon, really??!!
Peace
J
Friday, January 15, 2010
I'm so getting fired...
After dutifully discharging my responsibilities as Nurse Jane Fuzzy Wuzzy (NJFW) ... or at least trying really hard not to kill the patient or the care-taker ... I think I'm slipping some and am gonna get canned from this position.
I'd love to blame it on being tired and loopy, but I did get a short nap before I cooked dinner. Or perhaps it was because I had to use brain cells I haven't used in a while as I drove a car for the first time in 17 or 18 days. Can't blame jet lag .. there's no time difference between home and Cleveland (well, metaphysical time perhaps, and architectural time, or winning-sports-team time...).
But it's probably grounds for firing from Nurse Jane duty when in the midst of trying to help the patient retire for the evening, getting him comfortable and adjusting the new wedge pillow, NJFW first makes the patient laugh ( a no-no often with patients with giant zipper-like scars and such down their sensitive chests -- was bad enough earlier in the day when M sneezed for the first time post-surgery and his eyes went all cartoon buggy and little tweety birds & stars appeared over his head) -- and then in attempt at bad nurse-patient joke of some sort, NJFW pokes the patient. In the chest / tummy area. Oh crap. In the chest tube drain scar site. Oh double freaking, cheese-n-crackers, %^&*(#$ !!!! He was laughing, but crying, but laughing and crying and I was so fall-over-myself apologetic. Oh dear oh dear.
And then the one thing the patient asks for when I go back downstairs is to bring his best buddy, his heart-shaped chest pillow (he even named it ... "Chester" .. get it .. he hugs it to his chest to relieve chest pain & pressure ... awwww ). So I go downstairs .... and start checking email, scroll the TV guide, check other emails and generally forget what I went downstairs for in first place. Forcing the poor patient to get back outta bed and call for his NJFW to please throw up the pillow. D'OH!!
See!! I'm SOOO fired.
J
I'd love to blame it on being tired and loopy, but I did get a short nap before I cooked dinner. Or perhaps it was because I had to use brain cells I haven't used in a while as I drove a car for the first time in 17 or 18 days. Can't blame jet lag .. there's no time difference between home and Cleveland (well, metaphysical time perhaps, and architectural time, or winning-sports-team time...).
But it's probably grounds for firing from Nurse Jane duty when in the midst of trying to help the patient retire for the evening, getting him comfortable and adjusting the new wedge pillow, NJFW first makes the patient laugh ( a no-no often with patients with giant zipper-like scars and such down their sensitive chests -- was bad enough earlier in the day when M sneezed for the first time post-surgery and his eyes went all cartoon buggy and little tweety birds & stars appeared over his head) -- and then in attempt at bad nurse-patient joke of some sort, NJFW pokes the patient. In the chest / tummy area. Oh crap. In the chest tube drain scar site. Oh double freaking, cheese-n-crackers, %^&*(#$ !!!! He was laughing, but crying, but laughing and crying and I was so fall-over-myself apologetic. Oh dear oh dear.
And then the one thing the patient asks for when I go back downstairs is to bring his best buddy, his heart-shaped chest pillow (he even named it ... "Chester" .. get it .. he hugs it to his chest to relieve chest pain & pressure ... awwww ). So I go downstairs .... and start checking email, scroll the TV guide, check other emails and generally forget what I went downstairs for in first place. Forcing the poor patient to get back outta bed and call for his NJFW to please throw up the pillow. D'OH!!
See!! I'm SOOO fired.
J
Signs of the apocalypse ...
Sent via BlackBerry from T-Mobile
"I'm leaving on a jet plane..."
"...don't know when I'll be back again ..."
Actually I do hope to come here to visit Jen S. And go to Lolita again! But I hope there aren't trips necessary to the CC.
It's been a long, surreal trip. The longest extended away trip M & I have had, plenty of couple-time but all in a weird, not-like-to-try-this-again way.
My thanks to the folks @ the hotel (even including my running battle with housekeeping -- by the way, they took my short glasses again, no replacements, & the safety, non-skid, keep-the-patient-safe tub mat). Thanks to CC staff, esp the concierge who took care of our travel details & hopefully got M setup with carts & wheelchairs. (He has to look sicker & more heart-patienty today so we get lots of help -- I made him keep his hospital ID for this purpose)
And thanks to all our great friends!!
Peace
J
Sent via BlackBerry from T-Mobile
Actually I do hope to come here to visit Jen S. And go to Lolita again! But I hope there aren't trips necessary to the CC.
It's been a long, surreal trip. The longest extended away trip M & I have had, plenty of couple-time but all in a weird, not-like-to-try-this-again way.
My thanks to the folks @ the hotel (even including my running battle with housekeeping -- by the way, they took my short glasses again, no replacements, & the safety, non-skid, keep-the-patient-safe tub mat). Thanks to CC staff, esp the concierge who took care of our travel details & hopefully got M setup with carts & wheelchairs. (He has to look sicker & more heart-patienty today so we get lots of help -- I made him keep his hospital ID for this purpose)
And thanks to all our great friends!!
Peace
J
Sent via BlackBerry from T-Mobile
Thursday, January 14, 2010
I'm so tired ... part 327
Let's just assume that Jenn is tired, sleepy, under-caffeinated and likely to stay that way until past the point at which Punxsutawney Phill sees his shadow [and who knew!! there are competing Phil sites]. This way I'll stop blogging about being tired and boring everyone, including me. And I can stop feeling guilty about being tired b/c I'm still likely getting more sleep than himself. But I'm doing better than I expected, and taking to my semi-care taker role. I say "semi" becuase M is quite self-sufficient -- more so than I might have expected, especially one week past surgery.
For example, in Care Taking Lessons I've mentioned my struggles with shoe-lace-tying. And now I've been informed that perhaps all these years I've done it incorrectly. As M has proceeded to show me the proper way to tie his shoes, and his since taken the job back over himself. Which, is a good thing, but is leaving me few Nurse Jane Fuzzy Wuzzy moments here.
Peace
Jenn
For example, in Care Taking Lessons I've mentioned my struggles with shoe-lace-tying. And now I've been informed that perhaps all these years I've done it incorrectly. As M has proceeded to show me the proper way to tie his shoes, and his since taken the job back over himself. Which, is a good thing, but is leaving me few Nurse Jane Fuzzy Wuzzy moments here.
Peace
Jenn
Wednesday, January 13, 2010
My ongoing "battle" with housekeeping
Now they must've determined that I've had too much to drink ... or not nearly close to enough. They've taken away all my short glasses and not replaced them with anything. I did find some tall ones (still not sure what proper name is) so I guess we're still good to go.
J
Update -- they have remedied this personal problem of mine and returned my appropriate and much needed barware. I'm still fighting with M over it because now he's back around and wants his own glasses. Sheesh. ;-)
And I've solved my lexical dillema. The missing barware were Old Fashioneds ,or low-balls. And the ones they left me with extras of the other day were High-Balls. Bourbon tastes just fine in either thank you very much.
J
Update -- they have remedied this personal problem of mine and returned my appropriate and much needed barware. I'm still fighting with M over it because now he's back around and wants his own glasses. Sheesh. ;-)
And I've solved my lexical dillema. The missing barware were Old Fashioneds ,or low-balls. And the ones they left me with extras of the other day were High-Balls. Bourbon tastes just fine in either thank you very much.
More sleep = happier Nurse Jane
We both got more sleep last night -- although M's required some acts of contorsion on his part. As I told him, 'hey, WHATEVER works'.
Yesterday was a longish day -- hell, they ALL have been -- but in a different way. More active, and that's great. But also some nice sitting and chilling. And a real meal for M at a real restaurant type place. ok .. it was the same restaurant I've been eating dinner at with family and stuff off/on since the night of the surgery -- but it is good!
Highlight of the day -- at least as far as M was concerned -- getting caffeine. I desparately needed something more than ice tea and since I've commented that this appears to be a Pepsi town, or at least the CC has a big time Pepsi deal (dammit), I can't get a real, fully sugared, fully caffeinated god damn COKE anywhere. So -- it was off to Starbucks. See, this is a big deal because I don't drink coffee. Only once in a blue moon, or in desperation. And then only doctored and latted and creamed [hey a non-fat caramel latte ain't actually that bad!] and sypruped until it's just a hot adult milkshake [oops! this one IS!] with a hint of coffee flavor. thankfully that's what Starbucks excels at. So I got my hit and felt better.
And then M wanted to try some. Now mind you, he's been off ALL caffeine for 18+ months b/c it so screws with his system with the heart problem and the uber doses of meds. The weeks he went off cold turkey ... oh man oh man. So this was his first real sip or two of coffee in a long time. He tried mine. He was ok. He waited. He was still ok. He asked for more.
I told him "my caffeine dammit" ;-) So we went back later and he ordered his own latte and sipped it slowly and said it was like the veil that had been over his head was lifted for first time in long time and clarity returned. He may even have seen stars and tweety birds and angels singing. He is one damn happy camper. Such an ecstatic look on his face. Huh -- I think the Starbucks people may be his new BFFs and I am now distantly behind them. ;-)
Today -- more walking, chilling. And contacting airlines and such to get assistance getting him home.
Caretaking Lesson: Don't touch the patient's bananas, or now, his coffee. And when he says his needs pain pills now -- no arguing, no stopping to get completely dressed, do not pass Go or collect $200, just get the dang pills.
Peace
Jenn
Yesterday was a longish day -- hell, they ALL have been -- but in a different way. More active, and that's great. But also some nice sitting and chilling. And a real meal for M at a real restaurant type place. ok .. it was the same restaurant I've been eating dinner at with family and stuff off/on since the night of the surgery -- but it is good!
Highlight of the day -- at least as far as M was concerned -- getting caffeine. I desparately needed something more than ice tea and since I've commented that this appears to be a Pepsi town, or at least the CC has a big time Pepsi deal (dammit), I can't get a real, fully sugared, fully caffeinated god damn COKE anywhere. So -- it was off to Starbucks. See, this is a big deal because I don't drink coffee. Only once in a blue moon, or in desperation. And then only doctored and latted and creamed [hey a non-fat caramel latte ain't actually that bad!] and sypruped until it's just a hot adult milkshake [oops! this one IS!] with a hint of coffee flavor. thankfully that's what Starbucks excels at. So I got my hit and felt better.
And then M wanted to try some. Now mind you, he's been off ALL caffeine for 18+ months b/c it so screws with his system with the heart problem and the uber doses of meds. The weeks he went off cold turkey ... oh man oh man. So this was his first real sip or two of coffee in a long time. He tried mine. He was ok. He waited. He was still ok. He asked for more.
I told him "my caffeine dammit" ;-) So we went back later and he ordered his own latte and sipped it slowly and said it was like the veil that had been over his head was lifted for first time in long time and clarity returned. He may even have seen stars and tweety birds and angels singing. He is one damn happy camper. Such an ecstatic look on his face. Huh -- I think the Starbucks people may be his new BFFs and I am now distantly behind them. ;-)
Today -- more walking, chilling. And contacting airlines and such to get assistance getting him home.
Caretaking Lesson: Don't touch the patient's bananas, or now, his coffee. And when he says his needs pain pills now -- no arguing, no stopping to get completely dressed, do not pass Go or collect $200, just get the dang pills.
Peace
Jenn
Tuesday, January 12, 2010
Rough night
Perhaps I shouldn't have skipped my routine nightcap -- either because I pissed off the karma fairy that was looking over me, or maybe it was helping more than I thought beyond placebo effect.
Although I have little to no room to complain on this because while I didn't sleep well, I wasn't the one in pain. So a minor inconvenience really.
Weird sleep pattern last night in our first night back together and with no nurses or whatever. I was hypervigilant apparently and jumped or woke up at every move, moan, shift or whatever from him (he tried sleeping in bed first, mostly sitting up with umpteen pillows). To the point that somewhere in the midnight to 2am window he merely reached over to give me a pat or rub on the back and I immediately responded with "what, what??!! what do you need? are you ok?"
We're now working out a new system where I only jump up if he pokes me ... hard ... and I try to just go "mmmmmm" at anything else. He eventually left and went to sleep on the couch in the other room of the suite because it was harder, firmer, and narrower - so he was not tempted to turn over, lest he fall out, hit the table and then the floor. All the extra pillows and blankets I requesistioned came in handy.
He finally got some sleep after the 5:15am advil/tylenol triple dose. But he also asked me then to find out the pharmacy hours and get my butt there to fill his percoset pain pill scrip ASAP. So I reset the alarm, got up and ran to pharmacy to be there shortly after opening at 8am -- waited the hour or so for it to be filled. Wandered to hospital for ice tea and Au Bon Pain, got rest of the OTC meds and came back. Thankfully he hadn't woked up during any of this, and not until I got back. At which point I'm not sure whether it was the hotel door sorta slamming shut (hey! they're heavy!) or the pain that woke him. He says he's back at a 6-8 on the pain scale, nearly ICU levels. Percoset seems to work quick though b/c he was back to a 4 when I left to go type this. Cross fingers he feels better and doesn't need the percoset on a continual basis.
We're staying here at the hotel next to clinic until we leave on Fri. He has an outpatient follow-up on Thursday. And we're trying to see my good buddy Jen when she gets back to town after being called away for a family emergency/death in her husband's family while she was waiting with me on day of MLK's surgery.
Peace
Jenn
Although I have little to no room to complain on this because while I didn't sleep well, I wasn't the one in pain. So a minor inconvenience really.
Weird sleep pattern last night in our first night back together and with no nurses or whatever. I was hypervigilant apparently and jumped or woke up at every move, moan, shift or whatever from him (he tried sleeping in bed first, mostly sitting up with umpteen pillows). To the point that somewhere in the midnight to 2am window he merely reached over to give me a pat or rub on the back and I immediately responded with "what, what??!! what do you need? are you ok?"
We're now working out a new system where I only jump up if he pokes me ... hard ... and I try to just go "mmmmmm" at anything else. He eventually left and went to sleep on the couch in the other room of the suite because it was harder, firmer, and narrower - so he was not tempted to turn over, lest he fall out, hit the table and then the floor. All the extra pillows and blankets I requesistioned came in handy.
He finally got some sleep after the 5:15am advil/tylenol triple dose. But he also asked me then to find out the pharmacy hours and get my butt there to fill his percoset pain pill scrip ASAP. So I reset the alarm, got up and ran to pharmacy to be there shortly after opening at 8am -- waited the hour or so for it to be filled. Wandered to hospital for ice tea and Au Bon Pain, got rest of the OTC meds and came back. Thankfully he hadn't woked up during any of this, and not until I got back. At which point I'm not sure whether it was the hotel door sorta slamming shut (hey! they're heavy!) or the pain that woke him. He says he's back at a 6-8 on the pain scale, nearly ICU levels. Percoset seems to work quick though b/c he was back to a 4 when I left to go type this. Cross fingers he feels better and doesn't need the percoset on a continual basis.
We're staying here at the hotel next to clinic until we leave on Fri. He has an outpatient follow-up on Thursday. And we're trying to see my good buddy Jen when she gets back to town after being called away for a family emergency/death in her husband's family while she was waiting with me on day of MLK's surgery.
Peace
Jenn
Monday, January 11, 2010
movin', movin', movin', keep those doggies movin'
When I started to type this it was going to be about how M is moving around more, how he took a shower all by himself and shaved, and then walked with me off the floor to get my lunch.
BUT ... now it may be more about how he just informed me that they may move up his discharge time from Tuesday midday (standard across the hospital) to .... TONIGHT!
This is both cause for amazing excitement and a likewise great deal of "oh-shit" panic! Because I'm not ready!! Really! I planned on schlepping my shit that's piled up at the hospital back to the hotel tonight, and some of his less-needed crap, and then bringing him a bag of real-people clothes in the early morning for go-time. Well, shit. I don't have any of that stuff here now! And he is soooooo not heading out into the still snowing Cleveland night in his PJ bottoms, CC gown, robe and slippers. I may not have learned it all, or excelled so far in my caretaking, but I'm pretty damn sure none of that is on the approved list of discharge items or to-do's. And since he can't even lift a milk jug, I'm his personal Sherpa. And I'm not sure which is heavier, my damn laptop & laptop backpack, or a block of cement -- so add that to his laptop, the snack and entertainment bag, the iPod stereo speakers, assorted CC take-away items, papers, drugs, food, cards. aaaaaaaaaaaaaaaaaaaaaaaiiiiiiiiiiieeeeee. And yet, wheeeeeeeeeeeeeeeeeeeeeeeeeeeee!
Ok, they're here to stick him again, and the nurse is being hysterical -- they're talking about the 'controlled violence' or 'extreme torture' that is heart surgery and its aftermath. Things like "oh sure, let's cut you open, break your bones and then ask you to breathe deeply", and "we pump you full of drugs, then more drugs to balance those drugs -- drugs that stop you up and then different drugs to blow you out, I mean really blow you out!!"
ok ... gotta run ... I gotta go get the boy some pants and umm ... the other kind of pants too. ;-)
Peace
J
BUT ... now it may be more about how he just informed me that they may move up his discharge time from Tuesday midday (standard across the hospital) to .... TONIGHT!
This is both cause for amazing excitement and a likewise great deal of "oh-shit" panic! Because I'm not ready!! Really! I planned on schlepping my shit that's piled up at the hospital back to the hotel tonight, and some of his less-needed crap, and then bringing him a bag of real-people clothes in the early morning for go-time. Well, shit. I don't have any of that stuff here now! And he is soooooo not heading out into the still snowing Cleveland night in his PJ bottoms, CC gown, robe and slippers. I may not have learned it all, or excelled so far in my caretaking, but I'm pretty damn sure none of that is on the approved list of discharge items or to-do's. And since he can't even lift a milk jug, I'm his personal Sherpa. And I'm not sure which is heavier, my damn laptop & laptop backpack, or a block of cement -- so add that to his laptop, the snack and entertainment bag, the iPod stereo speakers, assorted CC take-away items, papers, drugs, food, cards. aaaaaaaaaaaaaaaaaaaaaaaiiiiiiiiiiieeeeee. And yet, wheeeeeeeeeeeeeeeeeeeeeeeeeeeee!
Ok, they're here to stick him again, and the nurse is being hysterical -- they're talking about the 'controlled violence' or 'extreme torture' that is heart surgery and its aftermath. Things like "oh sure, let's cut you open, break your bones and then ask you to breathe deeply", and "we pump you full of drugs, then more drugs to balance those drugs -- drugs that stop you up and then different drugs to blow you out, I mean really blow you out!!"
ok ... gotta run ... I gotta go get the boy some pants and umm ... the other kind of pants too. ;-)
Peace
J
Sunday, January 10, 2010
So tired - the sequel
This could become a multipart franchise to rival George Lucas.
I initially traded my nightcap for a glass of nice, CA zin with my juicy med rare burger that I got for dinner @ 9pm back at hotel. Hey, I eat pretty healthily all day @ hospital so dinner = some slack.
But then I wanted my KY bourbon nightcap afterall, fixed drink, started brewing ice tea (oh crap!!! It's still over there brewing!! %&@£ ) and went to bathroom to brush my hair. Except I ended up brushing my teeth instead. Mmmmm, minty fresh bourbon! Ugh
My life is full of "capture errors" in parlance of a cognitive something or other prof I've had on grad school.
I also have concern what the hotel thinks of my nightly drinking habit, because they've replaced my short squat glasses with tall ones (damned if I can remember which is Old fashioned vs Highball -- sorry Mom).
Care-taking Lessons of day:
-Goldfish brain finally figured to use towel as potholder when nuking to make tea
- Don't poke or rub patient too hard in sensitive bits during bath (NO, not Those bits you gutter brains!)
- M is faster than I, or he, thinks. He & his walking pole slipped past me tonite when I answered call from his bro & I was chasing him thru halls of unit and found him all at other end! (This is actually v. good thing!)
Peace
J
Sent via BlackBerry from T-Mobile
I initially traded my nightcap for a glass of nice, CA zin with my juicy med rare burger that I got for dinner @ 9pm back at hotel. Hey, I eat pretty healthily all day @ hospital so dinner = some slack.
But then I wanted my KY bourbon nightcap afterall, fixed drink, started brewing ice tea (oh crap!!! It's still over there brewing!! %&@£ ) and went to bathroom to brush my hair. Except I ended up brushing my teeth instead. Mmmmm, minty fresh bourbon! Ugh
My life is full of "capture errors" in parlance of a cognitive something or other prof I've had on grad school.
I also have concern what the hotel thinks of my nightly drinking habit, because they've replaced my short squat glasses with tall ones (damned if I can remember which is Old fashioned vs Highball -- sorry Mom).
Care-taking Lessons of day:
-Goldfish brain finally figured to use towel as potholder when nuking to make tea
- Don't poke or rub patient too hard in sensitive bits during bath (NO, not Those bits you gutter brains!)
- M is faster than I, or he, thinks. He & his walking pole slipped past me tonite when I answered call from his bro & I was chasing him thru halls of unit and found him all at other end! (This is actually v. good thing!)
Peace
J
Sent via BlackBerry from T-Mobile
To worry or not to worry
Yes, mornings are definitely rougher for M than days or evenings. And he even asked me today to try and get to the hospital earlier so I an be around to help and support during those times. No love is greater than Jenn the Night Bat readjusting her schedule to be more of a Morning Lark ... or at least a Morning Owl or something. But I'll be working on it for tomorrow and going forth. ho boy
This morning's worry, as detailed a bit more on Michael's blog, are PVCs (premature ventricular contractions - heart arrhythmias). Common post-surgery, and with exertion, or electrolyte imbalance, or tinkering with the heart, or adjusting meds, or just about anything and everything that Michael has had done to him or is going through. So it makes it hard to figure out what's causing and how to treat. Meanwhile his heart beat is not normal and feels "like Ringo Starr is soloing in my chest". I can even feel his pulse in his wrist and feel the beats & bumps, or hops, skips and pauses. This from someone who can't even find her own bloody pulse in the wrist.
While it's all common, and I've talked to two people with serious medical backgrounds, it's still a concern. And I'm just not sure how much or little to be concerned. Acting cool and together with M -- and overall I pretty much am -- but still kinda worried. It was these feelings of arrhythmias and fibrillating that M felt last night that had me reluctant to leave him and probably more contemplative and guilt-ridden or whatever it was when I posted late in the evening. But I put my trust in the staff at CC and have to go with that, ride it out. It did help though talking with my aunt who taught in Duke's med school & PA program for years and my uncle who is a PA (physicians' assistant) and who is the ultimate no bullshit, straight shooter. Also had email conversation with a great buddy from college who is a doc, a hospitalist at Northwestern Memorial in Chicago (the docs who specially take care of people in hospitals - they don't do other practices, they're based in the hospital). She gave me tons of great info, things to ask and watch for. We'll watch and see overnight and tomorrow and talk to more specialists as needed.
Gonna be a late dinner for me, as I'll leave him for the night, head to hotel, and afterward get in some quiet time (not that the hospital is a rockin', slammin' party on Sundays), my nightcap and perhaps one more last post. He wants me around as much as possible (awwwww) and nights or mornings alone are his wobbly periods. But at same time, I gotta eat and sleep some time. I can't afford to get sick or worn out this early in the recoup and recover time.
Peace
J
This morning's worry, as detailed a bit more on Michael's blog, are PVCs (premature ventricular contractions - heart arrhythmias). Common post-surgery, and with exertion, or electrolyte imbalance, or tinkering with the heart, or adjusting meds, or just about anything and everything that Michael has had done to him or is going through. So it makes it hard to figure out what's causing and how to treat. Meanwhile his heart beat is not normal and feels "like Ringo Starr is soloing in my chest". I can even feel his pulse in his wrist and feel the beats & bumps, or hops, skips and pauses. This from someone who can't even find her own bloody pulse in the wrist.
While it's all common, and I've talked to two people with serious medical backgrounds, it's still a concern. And I'm just not sure how much or little to be concerned. Acting cool and together with M -- and overall I pretty much am -- but still kinda worried. It was these feelings of arrhythmias and fibrillating that M felt last night that had me reluctant to leave him and probably more contemplative and guilt-ridden or whatever it was when I posted late in the evening. But I put my trust in the staff at CC and have to go with that, ride it out. It did help though talking with my aunt who taught in Duke's med school & PA program for years and my uncle who is a PA (physicians' assistant) and who is the ultimate no bullshit, straight shooter. Also had email conversation with a great buddy from college who is a doc, a hospitalist at Northwestern Memorial in Chicago (the docs who specially take care of people in hospitals - they don't do other practices, they're based in the hospital). She gave me tons of great info, things to ask and watch for. We'll watch and see overnight and tomorrow and talk to more specialists as needed.
Gonna be a late dinner for me, as I'll leave him for the night, head to hotel, and afterward get in some quiet time (not that the hospital is a rockin', slammin' party on Sundays), my nightcap and perhaps one more last post. He wants me around as much as possible (awwwww) and nights or mornings alone are his wobbly periods. But at same time, I gotta eat and sleep some time. I can't afford to get sick or worn out this early in the recoup and recover time.
Peace
J
Saturday, January 9, 2010
Long nights
This seems to be a routine or perhaps more like a ritual. A positive, calming ritual but one I don't intend to make a long habit - my nightly "KY" nightcap & blog post. Let ya figure which shouldn't be habit-forming.
Each day gets better or at least less overtly stressful. There are fewer big high or lows on the roller coaster. Mornings for him still seem roughest, possibly b/c of less than great nights. But his days decent and he peaks in afternoons or early eve. We'll see if that holds for another day. Only thing to really expect is change.
For me I think nites may be hitting harder. Long days, plenty of wondering, not enough activity for me probably, and stress catching up at end seem to all = not great sleep & never quite enough. I'm a nite-owl and all but it's not helping. So I get back to hotel & need quiet unwind personal time but that keeps me up later = less sleep. And cycle goes again. I'm nearly used to sleeping alone b/c of all his, and even my, biz trips so I don't really think that's primary prob. Noises are never an issue for deaf chick here! Least that's good!
Maybe it's guilt or something b/c I'm here at hotel, not hospital. Rational side says I know there's not damn thing I can do there. He's sleeping. He has nurses way more qualified than me. And if big prob I hope they'd call me. I even know I'm supposed to be taking care of me & that means sleeping in real bed with some "me time". Naturally it's just hard to do all that guilt-free.
Keep reading & leaving notes or emailing please--- I'm just now beginning to realize how absolutely vital all my "virtual" friends are at all times & especially after tomorrow pm when I'm here on my own. I can do this I know -- an I now know to ask for help. :-)
Peace
Jenn
Sent via BlackBerry from T-Mobile
Each day gets better or at least less overtly stressful. There are fewer big high or lows on the roller coaster. Mornings for him still seem roughest, possibly b/c of less than great nights. But his days decent and he peaks in afternoons or early eve. We'll see if that holds for another day. Only thing to really expect is change.
For me I think nites may be hitting harder. Long days, plenty of wondering, not enough activity for me probably, and stress catching up at end seem to all = not great sleep & never quite enough. I'm a nite-owl and all but it's not helping. So I get back to hotel & need quiet unwind personal time but that keeps me up later = less sleep. And cycle goes again. I'm nearly used to sleeping alone b/c of all his, and even my, biz trips so I don't really think that's primary prob. Noises are never an issue for deaf chick here! Least that's good!
Maybe it's guilt or something b/c I'm here at hotel, not hospital. Rational side says I know there's not damn thing I can do there. He's sleeping. He has nurses way more qualified than me. And if big prob I hope they'd call me. I even know I'm supposed to be taking care of me & that means sleeping in real bed with some "me time". Naturally it's just hard to do all that guilt-free.
Keep reading & leaving notes or emailing please--- I'm just now beginning to realize how absolutely vital all my "virtual" friends are at all times & especially after tomorrow pm when I'm here on my own. I can do this I know -- an I now know to ask for help. :-)
Peace
Jenn
Sent via BlackBerry from T-Mobile
Lighter notes
Still recapping events from the first part of step-down, from Friday 1/8.
If I didn't have a watch with the date and a nifty computer and my crackberry I would never bloody know what day it is. Of course I'm still not sure whether that matters at the moment. I know for sure that Michael doesn't really know what day it is nor that it matters a whit for him.
As noted before, there was more movement and going from place to place, uping & downing, etc as M made the move to a chair in ICU, then wheelchair to step-down and getting settled, and going back-n-forth (me, not him) to get things from the hotel. Like his telling me on the way from ICU to step-down that now that he was getting private digs he wanted his music. Right then, right now. Quick doctor, get that patient on 50 ml of iPod STAT!! So off to the hotel my Dad and I tramped. Ride on the bus TO the hotel = quick. Ride back = the local from Hartford and making all stops. This is funny because you can practically see the main entrance from our hotel, it's about 2 blocks away. So why the hell was I riding the bus? Other than having bags of crap, it was cold and snowy and I didn't want to schlep my parka around the hospital so I wasn't wearing it. Hence, no walking the 2 blocks and the bus ride covering 12 blocks of the same real-life 2 blocks. My poor father may still be complaining about the 35+ minutes of life he will never get back.
The single greatest moment of hijinks and hilarity of the trip occurred in early afternoon after M was in his new spiffy room. Everywhere in the hospital and especially at entrance to patient rooms there are bottles of antibacterial foam mounted to sterilize or clean hands. My mom came in to see M briefly for first time, rub his arm. He asked if she used the foam. Oops. So she went over to it and based on knowledge of other similar ones at different hospitals she went at it, wiggling it different directions. I went over to help and at same time I tried to direct her to pull nozzle toward her, she whacked it upwards and alcohol based anti-bac foam went spraying everywhere all over my Mom. Unfortunately a good bit of it went in her eyes, she snapped 'em shut but started semi-yelling, "it burns it burns!!!" and waving her arms. The foam also wound up all in her hair, down her sweater, over her face, in the ears. I went to help her, grabbed towels to wipe off, then decided we better get to sink and wet towels and wash off. She still had eyes shut so couldn't see the bathroom, so waved for me to guide her there. I grabbed her hand and then proceeded to accidentally pull her directly into the door frame -- whack. Then finally into the bathroom and cleaned up. Then she could open up and look at me and point out all the places that I had foam too. Meanwhile the poor heart patient was over in his bed laughing his butt off and trying very hard not to, sort of giggling and coughing. But at least he was smiling.
Care-taking Lesson of the Day: Don't lean on the side rails of the electronic, auto-controlled, lifter-upper-downer bed for the patient
Because it can't be too good for your poor heart patient husband (who is functionally blind with his glasses off and a fabric nightshade on over his head, and in the dark) when the bed crashes from its slightly elevated and slightly tilted position to dead-ass flat in mere seconds because his stupid-ass wife was leaning on the rails to talk and whisper loving words and news to him in the dark while wishing him goodnight.
If I didn't have a watch with the date and a nifty computer and my crackberry I would never bloody know what day it is. Of course I'm still not sure whether that matters at the moment. I know for sure that Michael doesn't really know what day it is nor that it matters a whit for him.
As noted before, there was more movement and going from place to place, uping & downing, etc as M made the move to a chair in ICU, then wheelchair to step-down and getting settled, and going back-n-forth (me, not him) to get things from the hotel. Like his telling me on the way from ICU to step-down that now that he was getting private digs he wanted his music. Right then, right now. Quick doctor, get that patient on 50 ml of iPod STAT!! So off to the hotel my Dad and I tramped. Ride on the bus TO the hotel = quick. Ride back = the local from Hartford and making all stops. This is funny because you can practically see the main entrance from our hotel, it's about 2 blocks away. So why the hell was I riding the bus? Other than having bags of crap, it was cold and snowy and I didn't want to schlep my parka around the hospital so I wasn't wearing it. Hence, no walking the 2 blocks and the bus ride covering 12 blocks of the same real-life 2 blocks. My poor father may still be complaining about the 35+ minutes of life he will never get back.
The single greatest moment of hijinks and hilarity of the trip occurred in early afternoon after M was in his new spiffy room. Everywhere in the hospital and especially at entrance to patient rooms there are bottles of antibacterial foam mounted to sterilize or clean hands. My mom came in to see M briefly for first time, rub his arm. He asked if she used the foam. Oops. So she went over to it and based on knowledge of other similar ones at different hospitals she went at it, wiggling it different directions. I went over to help and at same time I tried to direct her to pull nozzle toward her, she whacked it upwards and alcohol based anti-bac foam went spraying everywhere all over my Mom. Unfortunately a good bit of it went in her eyes, she snapped 'em shut but started semi-yelling, "it burns it burns!!!" and waving her arms. The foam also wound up all in her hair, down her sweater, over her face, in the ears. I went to help her, grabbed towels to wipe off, then decided we better get to sink and wet towels and wash off. She still had eyes shut so couldn't see the bathroom, so waved for me to guide her there. I grabbed her hand and then proceeded to accidentally pull her directly into the door frame -- whack. Then finally into the bathroom and cleaned up. Then she could open up and look at me and point out all the places that I had foam too. Meanwhile the poor heart patient was over in his bed laughing his butt off and trying very hard not to, sort of giggling and coughing. But at least he was smiling.
Care-taking Lesson of the Day: Don't lean on the side rails of the electronic, auto-controlled, lifter-upper-downer bed for the patient
Because it can't be too good for your poor heart patient husband (who is functionally blind with his glasses off and a fabric nightshade on over his head, and in the dark) when the bed crashes from its slightly elevated and slightly tilted position to dead-ass flat in mere seconds because his stupid-ass wife was leaning on the rails to talk and whisper loving words and news to him in the dark while wishing him goodnight.
Friday, January 8, 2010
Better days
Less sitting & waiting = good, but bad for blogging.
Sitting here now with my KY nightcap, my best buddy's awesome choco chip cookies & brewing my own iced tea for morning. Nearly burned my fingers on the very not microsafe mugs @ hotel - for the third dang time. My goldfish brain can't seem to remember this pitfall each day.
Sending the moms to do what moms often do best -- laundry. M is doing better and only so long anyone can sit at hospital & he doesn't want hovering. So this helps everyone. Sending M-I-L out with most as she wants to visit OH friends. Hey, this kills so many birds!
I'm also getting a massage at my parents hotel tomorrow morning after seeing Michael. Trying to get some taking-care-of-me done since everyone keeps reminding me to. And I have more knots in my neck, shoulders, back than an 1800s sailing ship.
Beginning of days of new-normal.
Peace
J
Sent via BlackBerry from T-Mobile
Sitting here now with my KY nightcap, my best buddy's awesome choco chip cookies & brewing my own iced tea for morning. Nearly burned my fingers on the very not microsafe mugs @ hotel - for the third dang time. My goldfish brain can't seem to remember this pitfall each day.
Sending the moms to do what moms often do best -- laundry. M is doing better and only so long anyone can sit at hospital & he doesn't want hovering. So this helps everyone. Sending M-I-L out with most as she wants to visit OH friends. Hey, this kills so many birds!
I'm also getting a massage at my parents hotel tomorrow morning after seeing Michael. Trying to get some taking-care-of-me done since everyone keeps reminding me to. And I have more knots in my neck, shoulders, back than an 1800s sailing ship.
Beginning of days of new-normal.
Peace
J
Sent via BlackBerry from T-Mobile
Morning notes
Miracle of miracles I'm not hung over after last night's post-surgery let-down bender of sorts. Either that or I'm still sotted.
M is doing better - enough to tell nurse to tell me " say hi! & get her ass over here". Sir yes sir!!
I'm on my way, on the bus & I even got a shower & snack after my 8 hrs shut-eye. Life is decent.
Peace
Jenn
Sent via BlackBerry from T-Mobile
M is doing better - enough to tell nurse to tell me " say hi! & get her ass over here". Sir yes sir!!
I'm on my way, on the bus & I even got a shower & snack after my 8 hrs shut-eye. Life is decent.
Peace
Jenn
Sent via BlackBerry from T-Mobile
Thursday, January 7, 2010
I'm so tired I'm stupid
No comments necessary on this being my constant state.
I'm now beyond tired, beyond my 43rd wind, and beyond my 5th drink or something like that. Had some good 'ol KY bourbon ... finally on ice this time and not out of the small itty bitty brown paper sack that held my trial size bottle in my purse all day. Bless my Irish lush parents!!!
And Jess insisted on wine with dinner. 2 bottles of a nice Marlborough Sauv Blanc. Plus maybe there was more booze somewhere. I think it even showed up in the Rum & Coke ice cream that accompanied the coconut cream mini-donuts and candied pineapple that they stuck my mom's b-day candle into. And there are more little bottles with my name on them upstairs should I need them.
But I know I'm so tired I'm stupid because when I left the table to go visit the facilities I damn near walked into the wrong door and room. I had my hand on the door and was looking at the little picture, thinking, gee that look's different than normal. Why is that?
D'oh.
Or it may have been when I couldn't quite instantly remember which elevator arrow key to press to go from floor #2 to floor #4.
But I've only been up 18.5 hours. Psshhaw. That's nothin' !! I've done worse lately. I've done worse often in my life.
Ok, maybe not really so much lately. And not apparently after the emotional/psychological equivalent of the Boston Marathon. Because I know I didn't move the equivalent of probably a 5K. And M had a rougher day. why the hell am I so tired??? Well, yeah, I didn't spend most of the day unconscious or on super-duper drugs, but still!! But boy oh boy.
And here's where I should probably give a big 'ol shout out to my doc(s) and the damn fine doses of meds they have me on now -- without which I wouldn't have gotten through the hell that has been academia and my hopefully-not-doomed grad school life, or the terribly packed and exciting holidays, or today. They're not reading but thank you Drs R and Dr Y!!
Despite all this -- I feel nearly guilty for going off to sleep like a normal person while M's in the ICU and doing whatever, or having whatever done and poked and prodded. He'd tell me to stop being silly. You'll tell me to stop being silly. What can I say -- it's the end of the day, I'm tired and stupid.
Ok. Now I really truly give up this time. Maybe I'll stay up for one last phone check with M's nurses. He's doing ok, resting, nodding off to football and meditation - but still hasn't had any ice or water. Hope that changes overnight. Thanks to any and all reading this or M's blog and all who've sent such great thoughts and virtual and real love. It means everything.
Peace
J
I'm now beyond tired, beyond my 43rd wind, and beyond my 5th drink or something like that. Had some good 'ol KY bourbon ... finally on ice this time and not out of the small itty bitty brown paper sack that held my trial size bottle in my purse all day. Bless my Irish lush parents!!!
And Jess insisted on wine with dinner. 2 bottles of a nice Marlborough Sauv Blanc. Plus maybe there was more booze somewhere. I think it even showed up in the Rum & Coke ice cream that accompanied the coconut cream mini-donuts and candied pineapple that they stuck my mom's b-day candle into. And there are more little bottles with my name on them upstairs should I need them.
But I know I'm so tired I'm stupid because when I left the table to go visit the facilities I damn near walked into the wrong door and room. I had my hand on the door and was looking at the little picture, thinking, gee that look's different than normal. Why is that?
D'oh.
Or it may have been when I couldn't quite instantly remember which elevator arrow key to press to go from floor #2 to floor #4.
But I've only been up 18.5 hours. Psshhaw. That's nothin' !! I've done worse lately. I've done worse often in my life.
Ok, maybe not really so much lately. And not apparently after the emotional/psychological equivalent of the Boston Marathon. Because I know I didn't move the equivalent of probably a 5K. And M had a rougher day. why the hell am I so tired??? Well, yeah, I didn't spend most of the day unconscious or on super-duper drugs, but still!! But boy oh boy.
And here's where I should probably give a big 'ol shout out to my doc(s) and the damn fine doses of meds they have me on now -- without which I wouldn't have gotten through the hell that has been academia and my hopefully-not-doomed grad school life, or the terribly packed and exciting holidays, or today. They're not reading but thank you Drs R and Dr Y!!
Despite all this -- I feel nearly guilty for going off to sleep like a normal person while M's in the ICU and doing whatever, or having whatever done and poked and prodded. He'd tell me to stop being silly. You'll tell me to stop being silly. What can I say -- it's the end of the day, I'm tired and stupid.
Ok. Now I really truly give up this time. Maybe I'll stay up for one last phone check with M's nurses. He's doing ok, resting, nodding off to football and meditation - but still hasn't had any ice or water. Hope that changes overnight. Thanks to any and all reading this or M's blog and all who've sent such great thoughts and virtual and real love. It means everything.
Peace
J
Hitting the wall
More update & venting later here. News on Michael's blog.
Longest day done. Kaput. Fried. All adrenaline spent. Which may be why M finally nudged me out of ICU @ 6pm. That & he was tired & sleepy. Go figure.
Michael said his pain was much better when I left, down to a 2 on the 1 - 10 scale. I was impressed. I'm about a 2 on a semi- regular basis, including right now.
I went to parents hotel, had a drink-drink, talked w/ my own "doc" who's wonderful & keeps me leveled, put feet up & worried if I'd ever get my feet back in my shoes.
And now dinner at the nicer version of affiliated, connected hotels. Where I hope to hell my face doesn't fall in my pork-wrapped, pork-stuffed, pork. It's a real possibility.
May be end for me today. More later and updates on when he moves to private digs.
Peace
J
Sent via BlackBerry from T-Mobile
Longest day done. Kaput. Fried. All adrenaline spent. Which may be why M finally nudged me out of ICU @ 6pm. That & he was tired & sleepy. Go figure.
Michael said his pain was much better when I left, down to a 2 on the 1 - 10 scale. I was impressed. I'm about a 2 on a semi- regular basis, including right now.
I went to parents hotel, had a drink-drink, talked w/ my own "doc" who's wonderful & keeps me leveled, put feet up & worried if I'd ever get my feet back in my shoes.
And now dinner at the nicer version of affiliated, connected hotels. Where I hope to hell my face doesn't fall in my pork-wrapped, pork-stuffed, pork. It's a real possibility.
May be end for me today. More later and updates on when he moves to private digs.
Peace
J
Sent via BlackBerry from T-Mobile
Exhale now .....
Forgive me teenage texting imitation but ... OMG OMG OMG .... whew.
Sorry for not much updating -- after I was given the update that major part started at 9am I got no news at all until I bugged and begged them close to noon for update and caught the surgeon for the news. Long long long part of the wait.
I didn't lose it until AFTER the surgery was done. Held it together this morning and then finally got shaky and teary and all after got news it was over.
And that's when I pulled the bottle of Woodford Reserve Kentucky special out of my purse and took a swig right there in the surgical waiting room.
More surprising, my mother did too. She's so NOT a Bourbon person it's not even funny. My dad looked at her and said when the hell was the last time you drank that - 40 years??
But we're ok now, eating lunch, waiting to go see him in ICU, practicing breathing and waiting for the next step.
Peace
Jenn
Sorry for not much updating -- after I was given the update that major part started at 9am I got no news at all until I bugged and begged them close to noon for update and caught the surgeon for the news. Long long long part of the wait.
I didn't lose it until AFTER the surgery was done. Held it together this morning and then finally got shaky and teary and all after got news it was over.
And that's when I pulled the bottle of Woodford Reserve Kentucky special out of my purse and took a swig right there in the surgical waiting room.
More surprising, my mother did too. She's so NOT a Bourbon person it's not even funny. My dad looked at her and said when the hell was the last time you drank that - 40 years??
But we're ok now, eating lunch, waiting to go see him in ICU, practicing breathing and waiting for the next step.
Peace
Jenn
The longest day - part one
A recap of the day so far:
3:45 am Day began in what should be (and IS) still considered the middle of the freaking night with the radio alarm going off to half classic rock-n-roll half static and the 4am wake-up call follow-up
Brain cells not operational ... as evidenced by the growing list thru the day of thing I maybe meant to bring to the hospital with me .. despite the giant set of bags accompanying us.
4:55 Nice driver from the hotel takes us to the hospital b/c it's just plain damn wrong to make the heart patient walk himself to the hospital pre-surgery! We did not get the potential police escort.
We're so early we beat the newspaper delivery trucks.
5:05 MLK leaves for the first time and round at pre-op and day of waiting begins for real. Very quiet in the hospital
5:30 JEB meets MLK in the pre-op prep area to get his gear and have our moments before we say our "see ya laters". He gives me his wedding ring and I'm wearing it on a chain ("near my heart" ... awwwwww. Treacly sweet moment). Says he was doing fine with his relaxation until I showed up and started babbling.
I'm thinking he wasn't quite joking ...
He wants me to learn to "just be" in the present and in his presence. Ohhhmmmmm. Gonna be tough but I'm trying.
6:00 We still talk. Ok, mostly I babble. he hums and sings some and tries not to get bad tunes stuck in his head. I accidentally put them there anyway. He says his new "happy word or place" may be "coffee".
6:20 We say our official "see ya laters" and kiss goodbye and off he goes to prep.
I manage not to cry. This is for the best. He's at the best place. [Repeat to self many times all day until I finally believe]
6:40 Jen S my good good dear buddy since college arrives to keep me company and distract me. We go for my 2nd breakfast of day and to catch up and keep me occupied.
8:30 go back to family area where our families have commandeered a giant table
9:00 first surgery update - he's in the 'major portion of surgery' -- guess he's cracked and ready.
Info session
3:45 am Day began in what should be (and IS) still considered the middle of the freaking night with the radio alarm going off to half classic rock-n-roll half static and the 4am wake-up call follow-up
Brain cells not operational ... as evidenced by the growing list thru the day of thing I maybe meant to bring to the hospital with me .. despite the giant set of bags accompanying us.
4:55 Nice driver from the hotel takes us to the hospital b/c it's just plain damn wrong to make the heart patient walk himself to the hospital pre-surgery! We did not get the potential police escort.
We're so early we beat the newspaper delivery trucks.
5:05 MLK leaves for the first time and round at pre-op and day of waiting begins for real. Very quiet in the hospital
5:30 JEB meets MLK in the pre-op prep area to get his gear and have our moments before we say our "see ya laters". He gives me his wedding ring and I'm wearing it on a chain ("near my heart" ... awwwwww. Treacly sweet moment). Says he was doing fine with his relaxation until I showed up and started babbling.
I'm thinking he wasn't quite joking ...
He wants me to learn to "just be" in the present and in his presence. Ohhhmmmmm. Gonna be tough but I'm trying.
6:00 We still talk. Ok, mostly I babble. he hums and sings some and tries not to get bad tunes stuck in his head. I accidentally put them there anyway. He says his new "happy word or place" may be "coffee".
6:20 We say our official "see ya laters" and kiss goodbye and off he goes to prep.
I manage not to cry. This is for the best. He's at the best place. [Repeat to self many times all day until I finally believe]
6:40 Jen S my good good dear buddy since college arrives to keep me company and distract me. We go for my 2nd breakfast of day and to catch up and keep me occupied.
8:30 go back to family area where our families have commandeered a giant table
9:00 first surgery update - he's in the 'major portion of surgery' -- guess he's cracked and ready.
Info session
Aaaand we're off!!
The Sitting & Waiting Championships have begun!!
They've taken Michael up for surgery prep & booted me out. Surgery itself likely to start approx 1hr or so - 7am hour sometime I think. More info will come as I know it.
Commence the good thoughts, karma, mantras or whatever you believe. And we feel your hugs here already.
Peace
Jenn
They've taken Michael up for surgery prep & booted me out. Surgery itself likely to start approx 1hr or so - 7am hour sometime I think. More info will come as I know it.
Commence the good thoughts, karma, mantras or whatever you believe. And we feel your hugs here already.
Peace
Jenn
Wednesday, January 6, 2010
T-minus 12 hours...
Finished long Day 3 of Sit & Wait, which as already mentioned was mostly about patient education and all kinds of last minute info. For example, if in the interest of stopping or preventing spread of MRSA, you want M to take these antibiotic nose ointment thingies, and you swabbed him for the culture -- why not do that more than 15 hours pre-op?? Like, oh, on one of the umpty other days we were here, or the day with all the other lab type tests. Whatever.
Met with Surgical God. He's nice, was sorta laid back even (huh? isn't the surgeon supposed to be the uppity, arrogant one and not the cardiologist? Our team seems to have that backwards). He answered questions, we answered the same questions for the 4,367th time. All good.
And we have the time frame now (hopefully) for the surgery tomorrow. A very early wake-up call in the oh-dark-thirty hours (AGAIN). Surgery not happening likely for a few hours after that - but should still be early morning. 3-6 hour wait for the surgery (most of that to crack him open and zip him back up again) and then after the doc comes to talk to me probably another 1-2 hrs before I see him in ICU. Longest day of my life I'm sure. But I have good folks around me. And he has the best taking care of him. And I have everyone in cyberspace. :-D
Caretaking Lesson of the Day: Socks.
It is surprisingly hard to take off someone else's socks. I have 30+ years of experience with socks. I don't claim to love them, but I am profecient. Or so I thought until trying to take off M's this morning. Good grief. I would fail all the basic parenting skills. [If you want to know why I was taking off his socks -- well, b/c he wasn't supposed to bend that leg -- but check out his post from earlier today!]
Send all your energy and warm thoughts to Dr Smedira in Cleveland tomorrow from 7 until past noon to be on the safe side. :)
Peace
J
Met with Surgical God. He's nice, was sorta laid back even (huh? isn't the surgeon supposed to be the uppity, arrogant one and not the cardiologist? Our team seems to have that backwards). He answered questions, we answered the same questions for the 4,367th time. All good.
And we have the time frame now (hopefully) for the surgery tomorrow. A very early wake-up call in the oh-dark-thirty hours (AGAIN). Surgery not happening likely for a few hours after that - but should still be early morning. 3-6 hour wait for the surgery (most of that to crack him open and zip him back up again) and then after the doc comes to talk to me probably another 1-2 hrs before I see him in ICU. Longest day of my life I'm sure. But I have good folks around me. And he has the best taking care of him. And I have everyone in cyberspace. :-D
Caretaking Lesson of the Day: Socks.
It is surprisingly hard to take off someone else's socks. I have 30+ years of experience with socks. I don't claim to love them, but I am profecient. Or so I thought until trying to take off M's this morning. Good grief. I would fail all the basic parenting skills. [If you want to know why I was taking off his socks -- well, b/c he wasn't supposed to bend that leg -- but check out his post from earlier today!]
Send all your energy and warm thoughts to Dr Smedira in Cleveland tomorrow from 7 until past noon to be on the safe side. :)
Peace
J
Can you be too informed?
I think, no, I know M is the best informed patient ever. From his years in medical editing and publishing and through the years in the pharmaceutical industry he can write the damn medical texts himself and explain his condition probably as well as any of the doctors. If you have doubts, read his blog posts about the cath or his original posts on what the hell his condition is and how it all works. See?? Medical jargon far beyond the average lay person! It can make following the conversation during consults with the doctor(s) challenging because they sit there and talk 'medicalese' and I have the deer-in-headlights look. I don't know whether his impressive knowledge impresses the doctors or scares them because they've finally encountered someone who knows nearly what they do, without the years of extra study and fancy-pants degrees. He's either a great patient or a pain in the .. ahem. But it is fascinating.
Me, I'm the "medical moron" in this pairing and am still struggling with how the heart works and the bits and parts -- but I'm a good little librarian researcher so I can find info (thank you HowStuffWorks! But I get easily distracted, like by these bits). And thankfully the CC has patient literature out the whazoo (see, there's a medical term I know!) and lots of pretty pictures. Like the ones that the nice clinical research nurse gave us this morning.
And unlike the patient, I did find the video presentation we just sat through on 'being a heart patient' informative. Ok, really bad production and condescending, but informative.
Ok. About time for the Surgical God to come talk to us.
Peace.
J
Me, I'm the "medical moron" in this pairing and am still struggling with how the heart works and the bits and parts -- but I'm a good little librarian researcher so I can find info (thank you HowStuffWorks! But I get easily distracted, like by these bits). And thankfully the CC has patient literature out the whazoo (see, there's a medical term I know!) and lots of pretty pictures. Like the ones that the nice clinical research nurse gave us this morning.
And unlike the patient, I did find the video presentation we just sat through on 'being a heart patient' informative. Ok, really bad production and condescending, but informative.
Ok. About time for the Surgical God to come talk to us.
Peace.
J
Tuesday, January 5, 2010
Pre-op Sit & wait day 2
We’re still in Cleveland, it’s still below freezing, it’s still snowing and we’re still in wait-mode. Today was day 2 really of the pre-op sitting-waiting phase mostly. Actually, it’s good practice for the main event, the Sitting-Waiting Championships, that come post-surgery and in the step-down unit. Well, for me anyway. M has to get up and walk around even when he really doesn’t want to, and perhaps use this breathing exercise tube gizmo that looks like it was the loser in a med student design contest and that he has to use up to 6 times per hour [Update - the video said 10 x/hour!!] Per hour? How does that leave any time for coughing, peeing, wheezing, moaning, resting ("so you can sleep medicine" ... apologies NyQuil!)or the mandatory walking exercises? Whoever said recovery from surgery was mostly about ‘resting’ was sadly misinformed I think.
So today was the diagnostic cardiac catheterization (or just “cath”). I’m sure the CC does plenty of those. Most hospitals are doing them for a reason, probably because the person is a 55+ guy who ate a lifetime supply of Big Macs, with coronary artery disease and is either having a heart attack or about to, and they cath him to put in the stent or balloon and open stuff back up. I know when M had his one done at a local hospital back last fall he was the youngest guy in the cardiac wing, oh, by a good 25 years easy. Not quite so today, but close.
And when the doctor came out afterwards to talk to me, he said “got a great visual of his coronary arteries and they look good”. Ummm. Okey-dokey. To which I kinda replied, “great! But ya know he’s not in here for that?!” And I asked if he got any pics of the enlarged areas, or the parts needing resection [Hey! I’m not the medical whiz in this couple so I still don’t 100% get all the anatomy and medical jargon that M and the docs keep whizzing around. Sigh] and said/thought “Um, how is this helping with the surgery prep for the inside part of the heart?” To which the doc answered that he doesn’t look inside, not his job, that’s the surgeon’s and he’s just confirming the Hypertrophic Cardiomyopathy diagnosis and numbers and confirming M’s coronaries are “just great”.
Apparently any time they’re gonna crack ya open to stop and fiddle with the heart they do the pre-op ‘look-see’ and figure out if you need the super value, multi-pack of surgery, the buy-one-get-another-one-at-the-same-exorbitant-cost deal. Fix it all up at once. But in medical lingo there’s “no cabbage here” (“cabbage” = CABG = Coronary Artery Bypass Graft; something the clinic really kind of invented/perfected - well, at least according to the spiffy documentary/propaganda on CC that we saw last night in our CC afflilated hotel room). So, in the unfortunate instance that M develops the oh-so more common heart issues later on in life (geez I hope to hell not!) they’ll just have to unzip him and do work again in 25+ years. So no extra procedures for Thursday’s surgery, he’s back at the hotel resting (and typing away furiously on his own laptop as I write) and we go back for Day 3 of pre-op Sit-and-Wait tomorrow, including meeting the big time surgery god who will do the magic on Thurs.
Today’s Caretaking Exercise: Learning to put on & tie someone else’s shoelaces.
Hey, I don’t have toddlers so this was not some already learned and mastered skill for me! But post-cath and with a pressure dressing the size of a deck of cards attached to his upper leg, M couldn’t exactly do his own lace things … and doesn’t worship at the altar of the Merrell slip-on Moc like I do.
Ok. Past my new-improved bed time.
Peace.
J
So today was the diagnostic cardiac catheterization (or just “cath”). I’m sure the CC does plenty of those. Most hospitals are doing them for a reason, probably because the person is a 55+ guy who ate a lifetime supply of Big Macs, with coronary artery disease and is either having a heart attack or about to, and they cath him to put in the stent or balloon and open stuff back up. I know when M had his one done at a local hospital back last fall he was the youngest guy in the cardiac wing, oh, by a good 25 years easy. Not quite so today, but close.
And when the doctor came out afterwards to talk to me, he said “got a great visual of his coronary arteries and they look good”. Ummm. Okey-dokey. To which I kinda replied, “great! But ya know he’s not in here for that?!” And I asked if he got any pics of the enlarged areas, or the parts needing resection [Hey! I’m not the medical whiz in this couple so I still don’t 100% get all the anatomy and medical jargon that M and the docs keep whizzing around. Sigh] and said/thought “Um, how is this helping with the surgery prep for the inside part of the heart?” To which the doc answered that he doesn’t look inside, not his job, that’s the surgeon’s and he’s just confirming the Hypertrophic Cardiomyopathy diagnosis and numbers and confirming M’s coronaries are “just great”.
Apparently any time they’re gonna crack ya open to stop and fiddle with the heart they do the pre-op ‘look-see’ and figure out if you need the super value, multi-pack of surgery, the buy-one-get-another-one-at-the-same-exorbitant-cost deal. Fix it all up at once. But in medical lingo there’s “no cabbage here” (“cabbage” = CABG = Coronary Artery Bypass Graft; something the clinic really kind of invented/perfected - well, at least according to the spiffy documentary/propaganda on CC that we saw last night in our CC afflilated hotel room). So, in the unfortunate instance that M develops the oh-so more common heart issues later on in life (geez I hope to hell not!) they’ll just have to unzip him and do work again in 25+ years. So no extra procedures for Thursday’s surgery, he’s back at the hotel resting (and typing away furiously on his own laptop as I write) and we go back for Day 3 of pre-op Sit-and-Wait tomorrow, including meeting the big time surgery god who will do the magic on Thurs.
Today’s Caretaking Exercise: Learning to put on & tie someone else’s shoelaces.
Hey, I don’t have toddlers so this was not some already learned and mastered skill for me! But post-cath and with a pressure dressing the size of a deck of cards attached to his upper leg, M couldn’t exactly do his own lace things … and doesn’t worship at the altar of the Merrell slip-on Moc like I do.
Ok. Past my new-improved bed time.
Peace.
J
Monday, January 4, 2010
Recap of why we're talking about hearts & caretaking and all that
In summer/fall of ‘08, after some odd health blips in past few years, Michael went for a check-up and the docs found what they thought was a mild heart murmur and said probably not to worry, no rush. But, based on advice of well-knowing family, he went to cardiologist for a work-up anyway. Initial tests (stress echo) were not good and indicated one kind of serious problem for which they ordered a near immediate cardiac catheterization, causing much panic around here. But it was a false positive - no blockages, no heart attack imminent- but bad news was it confirmed he had an uncommon, genetic based heart disease.
This condition called hypertrophic cardiomyopathy (or go here) has messed up the muscles of his heart and the left side is enlarged, the whole thing is stiff and doesn't flex or pump well, with blood getting obstructed and not pumping out to the body like it should. Always short of breath, palpitations sometimes, near fainting others, and is generally miserable and no longer to be active like he wants or needs. We've seen tons of docs and he was under care of specialists in this condition in Boston since January ‘09 -- with thought that medicine could control his symptoms and give him back some better quality of life -- that's true for most of patients with HCM.
But not for him. By late this summer it was still bad, maybe worse, and there were really no more medicine options for him. So it’s now January ’10 and we’re at the preeminent heart center in the country, maybe the world, for him to have open heart surgery to do a myectomy and cut out the obstructing part of the inner heart muscle and give him back a better working heart and better life.
Peace.
This condition called hypertrophic cardiomyopathy (or go here) has messed up the muscles of his heart and the left side is enlarged, the whole thing is stiff and doesn't flex or pump well, with blood getting obstructed and not pumping out to the body like it should. Always short of breath, palpitations sometimes, near fainting others, and is generally miserable and no longer to be active like he wants or needs. We've seen tons of docs and he was under care of specialists in this condition in Boston since January ‘09 -- with thought that medicine could control his symptoms and give him back some better quality of life -- that's true for most of patients with HCM.
But not for him. By late this summer it was still bad, maybe worse, and there were really no more medicine options for him. So it’s now January ’10 and we’re at the preeminent heart center in the country, maybe the world, for him to have open heart surgery to do a myectomy and cut out the obstructing part of the inner heart muscle and give him back a better working heart and better life.
Peace.
What's with the title of this blog??
When I decided to write my own musings on the healthcare journey I'm now on with Michael and particularly from my perspective as his companion, supporter, caretaker, person to make sure he doesn't fall over or something or whatever we want to call it -- I knew there could only be one perfect title.
One of my favorite sets of books & stories from when I was young was the Uncle Wiggily series of illustrated tales about this 'gentleman' bunny, Uncle Wiggily. And a reccuring character who was the bunny's friend, helpmate, and nurse, was Nurse Jane Fuzzy-Wuzzy. In my house when I was sick, we would read the books again and I would call my mom "Nurse Jane Fuzzy-Wuzzy" because she looked after me like Uncle Wiggly, and because it was fun for a kid to say, and fun apparently for my mom to affect and act out.
So, since I'll be doing some kinds of looking after and generally trying to make Michael feel better, I'm "Nurse Jane Fuzzy-Wuzzy" for a short time. And so is this blog.
One of my favorite sets of books & stories from when I was young was the Uncle Wiggily series of illustrated tales about this 'gentleman' bunny, Uncle Wiggily. And a reccuring character who was the bunny's friend, helpmate, and nurse, was Nurse Jane Fuzzy-Wuzzy. In my house when I was sick, we would read the books again and I would call my mom "Nurse Jane Fuzzy-Wuzzy" because she looked after me like Uncle Wiggly, and because it was fun for a kid to say, and fun apparently for my mom to affect and act out.
So, since I'll be doing some kinds of looking after and generally trying to make Michael feel better, I'm "Nurse Jane Fuzzy-Wuzzy" for a short time. And so is this blog.
Peace.
Didn't think I'd want my own blog during this, but...
For anyone reading this, it’s likely you’ve found your way here because you know Michael or me and perhaps got the email from someone about his surgery and his desire to communicate all health news via the Web and his blog...or I posted something online ...or I told you directly about my own blogging efforts.
If you’ve randomly stumbled across this blog, well, I’m sorry, and you can just hit some giant ‘NEXT’ button, or go back to Google, or wherever and continue your surfing. Because you’re probably not gonna find much of interest here. It’ll be full of inside references, jokes, acronyms, and generally not make much sense to anyone else. Or heck, perhaps not even to me. But hey, if you want, stick around
You see, I’ve started blogging on my own because I may have jumped the gun and overstepped things when I started posting to Michael’s heart blog BEFORE his surgery – apparently I wasn’t supposed to be doing the updating to the world until after he was duly incapacitated. Oops. Darn.
Well, I liked the posting and being able to leave longer notes or thoughts than on Facebook, so dammit I’m posting on my own blog now!
It may cover some of the same stuff as ends up on his blog, redundancy is big in health care isn’t it? But maybe also from a different angle, from the caretaker and the sitter-around-waiting person rather than the patient, or the patient’s temporary blogger. So read both if you want, read neither, whatever.
Peace.
JEB
If you’ve randomly stumbled across this blog, well, I’m sorry, and you can just hit some giant ‘NEXT’ button, or go back to Google, or wherever and continue your surfing. Because you’re probably not gonna find much of interest here. It’ll be full of inside references, jokes, acronyms, and generally not make much sense to anyone else. Or heck, perhaps not even to me. But hey, if you want, stick around
You see, I’ve started blogging on my own because I may have jumped the gun and overstepped things when I started posting to Michael’s heart blog BEFORE his surgery – apparently I wasn’t supposed to be doing the updating to the world until after he was duly incapacitated. Oops. Darn.
Well, I liked the posting and being able to leave longer notes or thoughts than on Facebook, so dammit I’m posting on my own blog now!
It may cover some of the same stuff as ends up on his blog, redundancy is big in health care isn’t it? But maybe also from a different angle, from the caretaker and the sitter-around-waiting person rather than the patient, or the patient’s temporary blogger. So read both if you want, read neither, whatever.
Peace.
JEB
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