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Sep. 21st, 2012 03:22 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
geminigirlYesterday's post was kind of short and shocked, not intentionally cryptic, so I thought I'd probably better provide some additional details-
About two years ago, Dad went into the hospital with symptoms of encephalitis. They eventually determined a cause, treated the cause and another infection he had he got better. He had heart surgery later that year, had the same kind of delirium for a prolonged period after the surgery. And similar incidents with infection, delirium, treatment, recovery two more times.
About 3 weeks ago (Labor Day weekend) he started developing the same symptoms-confusion, gait issues, etc. He was also having trouble with holding his bladder-this may or may not have been related to the gait and balance issues. Mom took him to the hospital where the ER couldn't figure out what to do with him and he was in limbo there ("clinical decisions unit") for over 24 hours. They finally admitted him to medicine where he underwent nearly three weeks of tests that came back with no answers-tests for mumps, for TB outside the lungs, for syphilis, for herpetic infections, you name it they did it..and it all came back okay. Multiple spinal taps, incredible amounts of blood, MRIs, CT scans, nuclear scans, left right, up down, contrast, no contrast. Still, he'd go through lucid periods, and he'd go through periods of delirium, he'd get worse when his fever went up. And so we went in circles, trying to keep him stable, and trying to figure out what it was.
In the meantime, he also stopped eating.
A few days ago, his blood tested positive for West Nile Virus, even though cerebrospinal fluid had been clear when they screened for it. However, the day before that happened, he'd started bleeding internally and losing tremendous amounts of blood and they couldn't figure out where. They provided blood and blood parts, stabilized him and proceeded over the next day to figure out where the blood was coming from (a bleeding ulcer) and treat it via endoscopy. Unfortunately, he continued to bleed, which meant there was another site. Meanwhile he's gotten weaker and weaker and less stable. Last night they tried some other ways to find the bleeding-he's really not in any shape to handle surgery right now. They haven't yet found the bleeding-this has included a nuclear scan to find the source of the blood, endoscopy, enteroscopy, etc. Today the decision was made to intubate him, sedate him and try once more with a scope with the surgeons right there to make decisions as needed. They've intubated, sedated, scoped and still not found the bleeding. The gastroenterologist said "Sometimes when this sort of thing happens, when we just can't find the bleeding, it's small vessels and they heal themselves." So they're currently keeping him sedated and intubated in ICU, and have given him one of those camera-pill things that go through the whole digestive system and send pictures back to an external monitor to see if they can find the source of the bleeding. The surgeons won't open him up to fix things unless they know right where they're going-he's not stable enough for them to just go without direction.
This is a grave situation. I'm being told "stay put" for now, but preparing for the worst because there's nothing else I can do. They don't know when or if they'll be able to extubate him. They don't know if they'll be able to stop the bleeding, and if they can't then it's only a matter of time before organ failure. And of course, the experimental treatment for the West Nile is on hold until they can stabilize him too.
I don't know if he'll make it through this. And I'm not really ready to let go yet. I'm distracting myself with a knitting class tomorrow with![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
ladysmith and getting my family ready to go if needed. entirelysonja has been tremendously helpful in trying to support me and help care for my children-I don't know anyone on Long Island who can care for them when I need childcare. And in the meantime, we wait, we pray, we hope, we talk on the phone a whole lot. And I try and find gratitude for the time that my daughters have had with him-Naomi might have a few memories of him, I don't know if Miriam will, but the few photos and memories that I can share will be precious always.
About two years ago, Dad went into the hospital with symptoms of encephalitis. They eventually determined a cause, treated the cause and another infection he had he got better. He had heart surgery later that year, had the same kind of delirium for a prolonged period after the surgery. And similar incidents with infection, delirium, treatment, recovery two more times.
About 3 weeks ago (Labor Day weekend) he started developing the same symptoms-confusion, gait issues, etc. He was also having trouble with holding his bladder-this may or may not have been related to the gait and balance issues. Mom took him to the hospital where the ER couldn't figure out what to do with him and he was in limbo there ("clinical decisions unit") for over 24 hours. They finally admitted him to medicine where he underwent nearly three weeks of tests that came back with no answers-tests for mumps, for TB outside the lungs, for syphilis, for herpetic infections, you name it they did it..and it all came back okay. Multiple spinal taps, incredible amounts of blood, MRIs, CT scans, nuclear scans, left right, up down, contrast, no contrast. Still, he'd go through lucid periods, and he'd go through periods of delirium, he'd get worse when his fever went up. And so we went in circles, trying to keep him stable, and trying to figure out what it was.
In the meantime, he also stopped eating.
A few days ago, his blood tested positive for West Nile Virus, even though cerebrospinal fluid had been clear when they screened for it. However, the day before that happened, he'd started bleeding internally and losing tremendous amounts of blood and they couldn't figure out where. They provided blood and blood parts, stabilized him and proceeded over the next day to figure out where the blood was coming from (a bleeding ulcer) and treat it via endoscopy. Unfortunately, he continued to bleed, which meant there was another site. Meanwhile he's gotten weaker and weaker and less stable. Last night they tried some other ways to find the bleeding-he's really not in any shape to handle surgery right now. They haven't yet found the bleeding-this has included a nuclear scan to find the source of the blood, endoscopy, enteroscopy, etc. Today the decision was made to intubate him, sedate him and try once more with a scope with the surgeons right there to make decisions as needed. They've intubated, sedated, scoped and still not found the bleeding. The gastroenterologist said "Sometimes when this sort of thing happens, when we just can't find the bleeding, it's small vessels and they heal themselves." So they're currently keeping him sedated and intubated in ICU, and have given him one of those camera-pill things that go through the whole digestive system and send pictures back to an external monitor to see if they can find the source of the bleeding. The surgeons won't open him up to fix things unless they know right where they're going-he's not stable enough for them to just go without direction.
This is a grave situation. I'm being told "stay put" for now, but preparing for the worst because there's nothing else I can do. They don't know when or if they'll be able to extubate him. They don't know if they'll be able to stop the bleeding, and if they can't then it's only a matter of time before organ failure. And of course, the experimental treatment for the West Nile is on hold until they can stabilize him too.
I don't know if he'll make it through this. And I'm not really ready to let go yet. I'm distracting myself with a knitting class tomorrow with
ladysmith and getting my family ready to go if needed. entirelysonja has been tremendously helpful in trying to support me and help care for my children-I don't know anyone on Long Island who can care for them when I need childcare. And in the meantime, we wait, we pray, we hope, we talk on the phone a whole lot. And I try and find gratitude for the time that my daughters have had with him-Naomi might have a few memories of him, I don't know if Miriam will, but the few photos and memories that I can share will be precious always.
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