Rob died at 1:45 December 25th, 2007, in my arms.
He died peacefully, without pain, without struggle.
There will be a service here in Fargo on Friday Dec 28th, but I'd love to have his life celebrated online too, somehow. Or at least get a "guestbook" going of some kind.
This leaves me...beyond anything.
Thursday, March 20, 2008
21 Dec, 2007
The CRT went fairly well; the first two leads (there are three) were implanted on Monday (I probably already blogged about that, but I'm running on about 2 hours of sleep and eleventy million cups of coffee), and the third was implated last night.
We thought that I'd be able to take Rob home today, but there was a complication....his potassium level this morning was 8.1. You read right. Normal is 2.5 - 5.0, and his was up the proverbial wazoo. Now in most cases, a potassium level that high would cause serious heart problems (like he doesn't have enough, right?); miraculously, the pacemaker was already doing it's job and so the EKG was normal...thankfully. He'll be in another night at least, and probably won't be home until Monday. If the meds don't work, he'll have to have dialysis (but only one course). We also need to talk about kidney transplant.
(His blood sugars are also through the roof - 628 was the last one about an hour ago).
His potassium is coming down though....but his creatinine is at 4.0 (it was 1.8 only ten days ago), and that's a major concern too, as he's already got 50% renal failure.
Oy.
I keep smiling though...and he knows I'm with him.
We thought that I'd be able to take Rob home today, but there was a complication....his potassium level this morning was 8.1. You read right. Normal is 2.5 - 5.0, and his was up the proverbial wazoo. Now in most cases, a potassium level that high would cause serious heart problems (like he doesn't have enough, right?); miraculously, the pacemaker was already doing it's job and so the EKG was normal...thankfully. He'll be in another night at least, and probably won't be home until Monday. If the meds don't work, he'll have to have dialysis (but only one course). We also need to talk about kidney transplant.
(His blood sugars are also through the roof - 628 was the last one about an hour ago).
His potassium is coming down though....but his creatinine is at 4.0 (it was 1.8 only ten days ago), and that's a major concern too, as he's already got 50% renal failure.
Oy.
I keep smiling though...and he knows I'm with him.
19 Dec, 2007 pt...whenever
Well, it's no longer disgusting o'clock....and I managed to grab a whole 2 hours of sleep. Wheee! I'm a little overhyped (which probably isn't helped by the super-grande-ultra-quad-shot-caramel-moc
I tried to comfort him by telling him it's a relic (ok, I should've chosen a better word than that...) of his live journey...a bookmark, of sorts.
It's much easier for me to say that though than it is for him to believe it.
Sigh.
I feel so bad for him.
**********
Take 3 hours of sleep; add two cups of mint tea and a crapload of patchouli incense and mix.
Then you might "rest" awhile.
Good lawdy we're both so tired! But everything seems ok. The third lead in the device will be done tomorrow (Thursday) and then he should be home for the weekend!
Weeeeeeeeeeeee!
(and...Moooooooooo!)
19 Dec, 2007 pt 2
During this journey, I've been able to somewhat keep ahold of my sanity.
(I picture my sanity as being something a bit like a pink Chuzzle. You know, those addictive fuzzy thingies in that addictive fuzzy game thingy).
Buddhism helped me regain my sanity once before (though the Chuzzle part remained a bit elusive for awhile - I think it was hiding beneath those oh-so-attractive mud-brown hospital gowns); I was 28 and had just had a hysterectomy. And in his infinite wisdom, the surgeon put me right back on the OB/GYN ward, along with about 20 new mothers. Babies cried. I cried. Maybe there was a lesson there, I'm not sure....but really, I left the hospital in pain, both physical and emotional. And Percocet can't touch emotional pain, believe me. I was hurting, angry and bitter about having the choice to have a child with my then-husband sliced away from me with the cool blade of a scalpel.
Someone, somewhere pointed me to a book by Thich Nhat Hanh, called "Anger: Wisdom for cooling the flames". I'm not entirely sure what happened whilst I was actually reading the book, but so much made sense to me; in the five years since then I've been able to deal far better with some major emotional issues, and actually come to view these situations with something akin to acceptance. As unlikely as it sounds, this acceptance is close friends with another Chuzzle-like entity, "calmness", and they both pay visits to my psyche daily.
It beats having to search high and low for a pink fuzzy Chuzzle who doesn't want to be found.
(I picture my sanity as being something a bit like a pink Chuzzle. You know, those addictive fuzzy thingies in that addictive fuzzy game thingy).
Buddhism helped me regain my sanity once before (though the Chuzzle part remained a bit elusive for awhile - I think it was hiding beneath those oh-so-attractive mud-brown hospital gowns); I was 28 and had just had a hysterectomy. And in his infinite wisdom, the surgeon put me right back on the OB/GYN ward, along with about 20 new mothers. Babies cried. I cried. Maybe there was a lesson there, I'm not sure....but really, I left the hospital in pain, both physical and emotional. And Percocet can't touch emotional pain, believe me. I was hurting, angry and bitter about having the choice to have a child with my then-husband sliced away from me with the cool blade of a scalpel.
Someone, somewhere pointed me to a book by Thich Nhat Hanh, called "Anger: Wisdom for cooling the flames". I'm not entirely sure what happened whilst I was actually reading the book, but so much made sense to me; in the five years since then I've been able to deal far better with some major emotional issues, and actually come to view these situations with something akin to acceptance. As unlikely as it sounds, this acceptance is close friends with another Chuzzle-like entity, "calmness", and they both pay visits to my psyche daily.
It beats having to search high and low for a pink fuzzy Chuzzle who doesn't want to be found.
19 Dec, 2007
Heavens to Murgatroyd....I'm tired.
It's around 1am, and Rob is in his room (207). The surgical team only got two leads implanted into the device, so Rob's staying in the hospital till Friday, because it's a bit more surgery to get the third lead implanted (they need a different surgeon to do this who isn't available until Thursday).
He's ok thought; BP and BG are within normal limits, though his pain is through the roof. He's currently on Percocet x 2 every four hours, with morphine every two hours as needed.
Poor darling....if I could take his pain to ease his suffering, I'd do it in a heartbeat.
Pun intended....maybe.
Going for more coffee!
xxxxx
It's around 1am, and Rob is in his room (207). The surgical team only got two leads implanted into the device, so Rob's staying in the hospital till Friday, because it's a bit more surgery to get the third lead implanted (they need a different surgeon to do this who isn't available until Thursday).
He's ok thought; BP and BG are within normal limits, though his pain is through the roof. He's currently on Percocet x 2 every four hours, with morphine every two hours as needed.
Poor darling....if I could take his pain to ease his suffering, I'd do it in a heartbeat.
Pun intended....maybe.
Going for more coffee!
xxxxx
18 Dec, 2007
You know the really scary thing about surgery? The feeling of not being in control.
Rob's CRT was scheduled for 11am this morning; because his blood sugar was only 72 they delayed it awhile (note: his BG is usually so out of whack that 72 is considered unconsciousness-level low for him. Yay). So, he's in there and I'm out here in the waiting room (which thankfully has a computer avec la Ninterweb...).
(The Ninterweb is, of course, Tess-ish for Internet. It's a bastardisation of "Interweb" - the origin of which escapes me - and includes the now-ubiquitousness of adding the letter "N" to every word which begins with a vowel. And plenty that don't, now I think about it).
The procedure itself is fairly minor, considering it's basically poking wires into your heart. Read more here
if you're interested.
It's the waiting, you know? The waiting around. That, and knowing that even with this device, the longterm prognosis is unaffected.
70% with congestive heart failure die within 5 years of diagnosis; realistically, heart transplantation is the only hope at cure.
God, that sucks so much I can't even quantify it.
Still, I'm trying to keep us both uplifted, which isn't as easy as it sounds (and it doesn't sound easy). Rob's still in a varying degree of denial about the condition and his situation, which I think is probably healthier for him mentally at this point. He's just so young. And it's happened so damn quickly. In many ways Rob has been the - admittedly cynical - poster child for "Why Not To Smoke. Like, seriously dude".
I think I need coffee.
Rob's CRT was scheduled for 11am this morning; because his blood sugar was only 72 they delayed it awhile (note: his BG is usually so out of whack that 72 is considered unconsciousness-level low for him. Yay). So, he's in there and I'm out here in the waiting room (which thankfully has a computer avec la Ninterweb...).
(The Ninterweb is, of course, Tess-ish for Internet. It's a bastardisation of "Interweb" - the origin of which escapes me - and includes the now-ubiquitousness of adding the letter "N" to every word which begins with a vowel. And plenty that don't, now I think about it).
The procedure itself is fairly minor, considering it's basically poking wires into your heart. Read more here
if you're interested.It's the waiting, you know? The waiting around. That, and knowing that even with this device, the longterm prognosis is unaffected.
70% with congestive heart failure die within 5 years of diagnosis; realistically, heart transplantation is the only hope at cure.
God, that sucks so much I can't even quantify it.
Still, I'm trying to keep us both uplifted, which isn't as easy as it sounds (and it doesn't sound easy). Rob's still in a varying degree of denial about the condition and his situation, which I think is probably healthier for him mentally at this point. He's just so young. And it's happened so damn quickly. In many ways Rob has been the - admittedly cynical - poster child for "Why Not To Smoke. Like, seriously dude".
I think I need coffee.
14 Dec, 2007
It's bloody freezing here. I mean really cold. Cold enough indeed to freeze the proverbial balls of the brass monkey.
Rob's CRT surgery is this Monday (the 17th, right?). It was originally scheduled for this past Monday, but his blood glucose was 728. That's Seven Hundred and Twenty Eight.
A tad high.
So we rescheduled.
I just want this procedure done with....it's a form of protection against sudden cardiac death, and I really can't emphasise how important this is.
I don't want him to die...period.
Much less as a sudden cardiac death, yanno?
This isn't making much sense at all. I'll come back later and retype this, probably..or not :) Yo
Rob's CRT surgery is this Monday (the 17th, right?). It was originally scheduled for this past Monday, but his blood glucose was 728. That's Seven Hundred and Twenty Eight.
A tad high.
So we rescheduled.
I just want this procedure done with....it's a form of protection against sudden cardiac death, and I really can't emphasise how important this is.
I don't want him to die...period.
Much less as a sudden cardiac death, yanno?
This isn't making much sense at all. I'll come back later and retype this, probably..or not :) Yo
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