To my AGO friends, With a heavy heart... prayers needed.
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cardaddy
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- Nov 20, 2012
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- #44
Hi all,
Wanted to thank you all again for your prayers, and well wishes for my father in law, Papa Fred. It’s been one strange 10 days since we rushed him to the hospital.
Day one, they found masses in his lung, and another in his brain. Obvious conclusion(s), one by a neurologist, another by his long standing oncologist were cancer in both areas.
However… the oncologist was sure that it was lung cancer, that had metastasized to his brain. This is because she’s been treating him for B Cell Lymphoma for over a year now. However, she said THIS wasn’t detected, nor EXPECTED based on his testing, (which included a bone marrow test back in December).
Then the neurologist said, due to the size of the one in the brain it HAD TO BE the ‘primary’ source. According to him, you just NEVER get something this large in your brain without it starting THERE.
We’ve had good days with him, and bad. We’ve also had both occupational and physical therapy coming to visit him daily. Some days he could get up (with the belt around his chest) and walk with his walker. Most however he couldn't, and it got worse with every passing day.
None the less, the plan was to take him to radiation oncology and start treating the brain tumor. Meanwhile, they did a lung biopsy, last Friday. That came back Monday, but was inconclusive. WHAT? I thought it’d tell you, either YES, it’s cancer, or NO it’s not. Oh boy...
Back to brain radiation. We had the first visit (transported by ambulance literally across the parking lot) for initial scans. This was to be followed up by 10 days of treatments. That day he was so ‘out of it’ they were thinking it’d be better to send him directly to hospice. YES, it was THAT BAD!
I explained that the day before, he had been up (with help) using a walker, eating (with help) or at least picking at his food, three times a day. We/they attributed his loss of cognizance that day to a high dosage of sleeping meds the night before. Next day he was much clearer, so they rescheduled the next trip to radiation. That day comes around, and he’s out of it again. Had one more good day after the ‘mixed up’ one, then the next was SERIOUSLY downhill.
He had started losing sight, and the ability to track last week. Then by Monday he’d lost most of his hearing, strength, overall stability, and ALL his left side as well as most of his straight ahead vision. I mean his eyes were there, and his left eye was moving in concert with his right one, just that his brain isn't allowing him to see straight ahead or to the left no matter what he did. He did walk in the hall a bit with the therapists, but he kept running into the wall on his right, (being as he could only see to the right).
Tuesday, they sent him for ANOTHER left lung biopsy after breakfast. Then by Tuesday afternoon I was getting pretty worried because he slept most of the day (they gave him sleeping meds again Monday night), but by 4:40 he was awake, and sat in his chair for 3 hours, even had dinner there.
I’ve been spending all day there most days, 10~12 hours a day, so I've been taking hourly notes, talking with nurses, therapists, doctors, you name it. I've even had to start setting up in-home aids to come out. One for 3 times a week to do therapy, and another to be with hi 24/7 as they SAID they were sending him home Tuesday or Wednesday at the latest.
(Although by then I was begging them to keep him through at least Thursday so we could see how he'd tolerate the first two radiation treatments, PLUS it'd give me time to get the house ready for him, and get staffing there.)
Then Tuesday afternoon, CarMomma and her mother came by and stayed through supper, until it was time to tuck him in and she took her mom home, then I went home.
Wednesday however, when she checked in on him at 7:00 (on the way to work) he wasn’t waking up. Then when I got there to spend the day he was COMPLETELY CHECKED OUT. I mean he wasn't looking at you, he was looking THROUGH you! His eyes were opened about 1/16th of an inch, and he couldn't move his arms, especially his left one. He'd lost all ability to communicate, or respond at all by Wednesday morning. Then by mid-day he couldn't even suck tea through a straw.
I was getting upset by then, asking them if they’d ‘dosed’ him again with Restoril after we left Tuesday night, (which they had btw).
However… this turned out NOT to be the problem.
They transported him again in the ambulance for radiation Wednesday, but didn’t do it when he got there. His condition was worse, much, much, MUCH worse!
So we get a call Wednesday night at 11:10 saying they were transporting him from Piedmont Henry, to Piedmont Atlanta downtown.
WHAT???
Transporting him?
In the MIDDLE OF THE NIGHT????
The transport didn’t happen during the night however, and we had to wait ALL DAY THURSDAY!!!
Meanwhile... Thursday he continued to get even worse, and hadn’t spoken, or been able to look at, or recognize anyone (just barely cracking his eyes open, if at all) for over 48 hours by then. Finally, Thursday night at around 6:30 they took him up to Piedmont Atlanta. Honestly… he should have been there earlier, and the downtown hospital (which has been Piedmont as long as I can remember) is one of the best hospitals in the Southeast. (There and Emory of course.)
We were told that the head of Radiation Oncology had signed off on his transfer, and the Brain Tumor Team was awaiting his arrival. Come to find out… they have a world class team of almost 50 Brain Tumor specialists in the team downtown, several of which had been consulting on his case all week. We figured once they got him there, got him checked out, took new scans, then compared them to the ones from earlier in the week, it’d be between 9:00 and 10:00 last night.
Sure enough… at 9:30 we received a call from the floor doctor at the nurses station, saying they’d looked at his chart, then wanted to know if we could verify his DNR.
WHAT THE HECK?!!?!!!
That conversation started like... well... you can imagine us hearing him asking if we wanted them to revive him. I mean HOLY MOLY!
Then he said they’d scheduled Papa Fred for brain surgery this morning! (Friday)
BOY… this wasn’t what we were expecting.
Then this morning they did another MRI, (ordered by the surgeon). Not long after, we received a call from Dr. Howard Chandler, the Chief Neurosurgical Oncologist, saying he’d compared today’s MRI (with contrast) to both of the earlier scans, (both a MRI and a CT, as well as scans from the Radiation Oncology building where he'd been twice already) and whatever it is in his brain has gotten larger, (every time, every scan, since the 12th).
So today we were faced with two options.
1: Do nothing, (radiation is off the table for now) and he has DAYS to live!
2: Do brain surgery.
He also said radiation just couldn’t be considered at this point, because it’d take till the end of the first round of 10 before we’d start to see ANY results. By then, Papa Fred would be dead.
That is when he told us that this *might* be a brain abscess, which could be drained. OR… it could be the tumor they’ve been thinking it is for over a week now. Thing is… an abscess and a tumor show up the same on the scans. Either way, he’s going in behind his ear, opening a place in his skull about the size of a quarter, and finding out what it in there.
Of course we questioned him thoroughly. That is… in between him offering up any and every possible question we could have thought about BEFORE we even asked him. I gotta’ say, this guy is BY FAR the most thorough, most complete, most prepared to talk to family, and the most talkative surgeon I’ve ever met. By the time we had talked for a few minutes all our fears were addressed. (That and then some, plus he's from here, which meant we could understand him!):dblthumb2:
This… guys… (the possibility of a brain abscess) honestly… was a blessing in disguise!
Prayers may indeed have taken a part in what has happened this week.
I wouldn't wish this on anyone, but given the choice between a tumor and an abscess... well.... I'll take the latter. Although it’s a shame he had to get as bad as he was, and still is, to get him to the Brain Tumor Center.
He went into surgery before noon today (Friday). It was supposed to take 90 minutes to 2 hours. But as everything else this past 10 days… It took twice as long as expected.
It was after 4:00 this afternoon when Deb’s phone rang, it was Dr. Chandler, saying it wasn’t a tumor… IT WASN’T A TUMOR! Hallelujah!!!
Not that it wasn’t a deadly infection, but working with the abscess infection was something that he could (and did) clean out with a needle, rather than a blade.
After speaking with Dr. Chandler after the surgery, we received news as good as it could be. Not out of the woods by ANY MEANS, but we’ve stopped the pressure on his brain.
And without any cutting!
Then it got even better. The second lung biopsy came back today. He has two masses in his left lung, (we found that out last week of course) but NEITHER is cancer. Oh but by the grace of GOD! They are “inflammatory lesions” caused by his B Cell Lymphoma, but not something that’ll require aggressive cancer treatments.
For now, he’s in ICU, on very aggressive anti-biotic therapy... and will be till at least Monday. And of course that means no visitors but immediate family, and for just a few minutes at a time. He’s not well by any stretch, but all things considered this was a good day. A good day indeed. Looking at his photo from Wednesday, Thursday, and again today, you can see his eyes are starting to open this afternoon. Folks... I’ve not been so happy in a long, long…. LOOOOOOOONNNNGGGGGG time!:xyxthumbs:
Of course we still have a good 10 days in Piedmont downtown, (which is REALLY hard for us, being 45 miles away, which means we can't be there every day, all day) but that is surely better than the alternative.
We even spoke today with doctor Chandler about once we get out of the woods here, we’ll move him most likely to rehab for a while. That’ll probably be several weeks looking at how bad he got, (especially in such a short time). It will take his brain a while to recover for sure. That and the fact that he’s almost 87 makes it certainly precarious to say the least.
Hopefully however, once he starts to gain strength and cognitive skills, then we can move him back down here for the rehab part. Just too early to tell at this point.
We CERTAINLY have a ways to go, and he’s NOT a well man by any measure. But if we can get through the weekend we’ll start to know more come Monday. We surely came close to it going a different direction, FOR SURE!
Again guys… I want to thank you with my heart in my hands for your kind words, hopes, thoughts, and prayers. My wife, my family, we couldn’t have hoped for a better outcome today (so far).
James 5:13~16
Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.
Wanted to thank you all again for your prayers, and well wishes for my father in law, Papa Fred. It’s been one strange 10 days since we rushed him to the hospital.
Day one, they found masses in his lung, and another in his brain. Obvious conclusion(s), one by a neurologist, another by his long standing oncologist were cancer in both areas.
However… the oncologist was sure that it was lung cancer, that had metastasized to his brain. This is because she’s been treating him for B Cell Lymphoma for over a year now. However, she said THIS wasn’t detected, nor EXPECTED based on his testing, (which included a bone marrow test back in December).
Then the neurologist said, due to the size of the one in the brain it HAD TO BE the ‘primary’ source. According to him, you just NEVER get something this large in your brain without it starting THERE.
We’ve had good days with him, and bad. We’ve also had both occupational and physical therapy coming to visit him daily. Some days he could get up (with the belt around his chest) and walk with his walker. Most however he couldn't, and it got worse with every passing day.
None the less, the plan was to take him to radiation oncology and start treating the brain tumor. Meanwhile, they did a lung biopsy, last Friday. That came back Monday, but was inconclusive. WHAT? I thought it’d tell you, either YES, it’s cancer, or NO it’s not. Oh boy...
Back to brain radiation. We had the first visit (transported by ambulance literally across the parking lot) for initial scans. This was to be followed up by 10 days of treatments. That day he was so ‘out of it’ they were thinking it’d be better to send him directly to hospice. YES, it was THAT BAD!
I explained that the day before, he had been up (with help) using a walker, eating (with help) or at least picking at his food, three times a day. We/they attributed his loss of cognizance that day to a high dosage of sleeping meds the night before. Next day he was much clearer, so they rescheduled the next trip to radiation. That day comes around, and he’s out of it again. Had one more good day after the ‘mixed up’ one, then the next was SERIOUSLY downhill.
He had started losing sight, and the ability to track last week. Then by Monday he’d lost most of his hearing, strength, overall stability, and ALL his left side as well as most of his straight ahead vision. I mean his eyes were there, and his left eye was moving in concert with his right one, just that his brain isn't allowing him to see straight ahead or to the left no matter what he did. He did walk in the hall a bit with the therapists, but he kept running into the wall on his right, (being as he could only see to the right).
Tuesday, they sent him for ANOTHER left lung biopsy after breakfast. Then by Tuesday afternoon I was getting pretty worried because he slept most of the day (they gave him sleeping meds again Monday night), but by 4:40 he was awake, and sat in his chair for 3 hours, even had dinner there.
I’ve been spending all day there most days, 10~12 hours a day, so I've been taking hourly notes, talking with nurses, therapists, doctors, you name it. I've even had to start setting up in-home aids to come out. One for 3 times a week to do therapy, and another to be with hi 24/7 as they SAID they were sending him home Tuesday or Wednesday at the latest.
(Although by then I was begging them to keep him through at least Thursday so we could see how he'd tolerate the first two radiation treatments, PLUS it'd give me time to get the house ready for him, and get staffing there.)
Then Tuesday afternoon, CarMomma and her mother came by and stayed through supper, until it was time to tuck him in and she took her mom home, then I went home.
Wednesday however, when she checked in on him at 7:00 (on the way to work) he wasn’t waking up. Then when I got there to spend the day he was COMPLETELY CHECKED OUT. I mean he wasn't looking at you, he was looking THROUGH you! His eyes were opened about 1/16th of an inch, and he couldn't move his arms, especially his left one. He'd lost all ability to communicate, or respond at all by Wednesday morning. Then by mid-day he couldn't even suck tea through a straw.
I was getting upset by then, asking them if they’d ‘dosed’ him again with Restoril after we left Tuesday night, (which they had btw).
However… this turned out NOT to be the problem.They transported him again in the ambulance for radiation Wednesday, but didn’t do it when he got there. His condition was worse, much, much, MUCH worse!
So we get a call Wednesday night at 11:10 saying they were transporting him from Piedmont Henry, to Piedmont Atlanta downtown.
WHAT???
Transporting him?
In the MIDDLE OF THE NIGHT????
The transport didn’t happen during the night however, and we had to wait ALL DAY THURSDAY!!!
Meanwhile... Thursday he continued to get even worse, and hadn’t spoken, or been able to look at, or recognize anyone (just barely cracking his eyes open, if at all) for over 48 hours by then. Finally, Thursday night at around 6:30 they took him up to Piedmont Atlanta. Honestly… he should have been there earlier, and the downtown hospital (which has been Piedmont as long as I can remember) is one of the best hospitals in the Southeast. (There and Emory of course.)
We were told that the head of Radiation Oncology had signed off on his transfer, and the Brain Tumor Team was awaiting his arrival. Come to find out… they have a world class team of almost 50 Brain Tumor specialists in the team downtown, several of which had been consulting on his case all week. We figured once they got him there, got him checked out, took new scans, then compared them to the ones from earlier in the week, it’d be between 9:00 and 10:00 last night.
Sure enough… at 9:30 we received a call from the floor doctor at the nurses station, saying they’d looked at his chart, then wanted to know if we could verify his DNR.
WHAT THE HECK?!!?!!!
That conversation started like... well... you can imagine us hearing him asking if we wanted them to revive him. I mean HOLY MOLY!
Then he said they’d scheduled Papa Fred for brain surgery this morning! (Friday)
BOY… this wasn’t what we were expecting.
Then this morning they did another MRI, (ordered by the surgeon). Not long after, we received a call from Dr. Howard Chandler, the Chief Neurosurgical Oncologist, saying he’d compared today’s MRI (with contrast) to both of the earlier scans, (both a MRI and a CT, as well as scans from the Radiation Oncology building where he'd been twice already) and whatever it is in his brain has gotten larger, (every time, every scan, since the 12th).
So today we were faced with two options.
1: Do nothing, (radiation is off the table for now) and he has DAYS to live!
2: Do brain surgery.
He also said radiation just couldn’t be considered at this point, because it’d take till the end of the first round of 10 before we’d start to see ANY results. By then, Papa Fred would be dead.
That is when he told us that this *might* be a brain abscess, which could be drained. OR… it could be the tumor they’ve been thinking it is for over a week now. Thing is… an abscess and a tumor show up the same on the scans. Either way, he’s going in behind his ear, opening a place in his skull about the size of a quarter, and finding out what it in there.
Of course we questioned him thoroughly. That is… in between him offering up any and every possible question we could have thought about BEFORE we even asked him. I gotta’ say, this guy is BY FAR the most thorough, most complete, most prepared to talk to family, and the most talkative surgeon I’ve ever met. By the time we had talked for a few minutes all our fears were addressed. (That and then some, plus he's from here, which meant we could understand him!):dblthumb2:
This… guys… (the possibility of a brain abscess) honestly… was a blessing in disguise!
Prayers may indeed have taken a part in what has happened this week.
I wouldn't wish this on anyone, but given the choice between a tumor and an abscess... well.... I'll take the latter. Although it’s a shame he had to get as bad as he was, and still is, to get him to the Brain Tumor Center.
He went into surgery before noon today (Friday). It was supposed to take 90 minutes to 2 hours. But as everything else this past 10 days… It took twice as long as expected.
It was after 4:00 this afternoon when Deb’s phone rang, it was Dr. Chandler, saying it wasn’t a tumor… IT WASN’T A TUMOR! Hallelujah!!!
Not that it wasn’t a deadly infection, but working with the abscess infection was something that he could (and did) clean out with a needle, rather than a blade.
After speaking with Dr. Chandler after the surgery, we received news as good as it could be. Not out of the woods by ANY MEANS, but we’ve stopped the pressure on his brain.
And without any cutting!
Then it got even better. The second lung biopsy came back today. He has two masses in his left lung, (we found that out last week of course) but NEITHER is cancer. Oh but by the grace of GOD! They are “inflammatory lesions” caused by his B Cell Lymphoma, but not something that’ll require aggressive cancer treatments.
For now, he’s in ICU, on very aggressive anti-biotic therapy... and will be till at least Monday. And of course that means no visitors but immediate family, and for just a few minutes at a time. He’s not well by any stretch, but all things considered this was a good day. A good day indeed. Looking at his photo from Wednesday, Thursday, and again today, you can see his eyes are starting to open this afternoon. Folks... I’ve not been so happy in a long, long…. LOOOOOOOONNNNGGGGGG time!:xyxthumbs:
Of course we still have a good 10 days in Piedmont downtown, (which is REALLY hard for us, being 45 miles away, which means we can't be there every day, all day) but that is surely better than the alternative.
We even spoke today with doctor Chandler about once we get out of the woods here, we’ll move him most likely to rehab for a while. That’ll probably be several weeks looking at how bad he got, (especially in such a short time). It will take his brain a while to recover for sure. That and the fact that he’s almost 87 makes it certainly precarious to say the least.
Hopefully however, once he starts to gain strength and cognitive skills, then we can move him back down here for the rehab part. Just too early to tell at this point.
We CERTAINLY have a ways to go, and he’s NOT a well man by any measure. But if we can get through the weekend we’ll start to know more come Monday. We surely came close to it going a different direction, FOR SURE!
Again guys… I want to thank you with my heart in my hands for your kind words, hopes, thoughts, and prayers. My wife, my family, we couldn’t have hoped for a better outcome today (so far).
James 5:13~16
Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.
Setec Astronomy
Well-known member
- Aug 31, 2010
- 17,048
- 1,337
Wow, what a roller coaster! Glad things are looking (a little) up.
Coopers ST
Active member
- Nov 23, 2013
- 1,277
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Wow, all considering, sounds like pretty good news. Thoughts are continued to go your way.
cardaddy
New member
- Nov 20, 2012
- 3,937
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- Thread starter
- #48
Hi all... thanks for your continued prayers.
This thing has gone from shocking, to bad, to possibly better, to a rollercoaster that never tops the hill, never goes down, just goes up, starts to level a bit, then keeps going up.
Based on the brain abscess, the initial thought was that he had contracted "Nocardia", or what it turns into, once if forms lesions (infections)... "Nocardiosis".
It can start as a skin sore, and if not caught in time, migrate to the lung(s). Then if THAT isn't caught in time, it can move to the brain, as a brain abscess. It is SO RARE that only 500~1000 people ever get it in the US per year. It's also so rare that they don't have specific antibiotics to fight it. Instead, they are giving him a LOT of very strong ones via IV, different ones in each arm, one changing out every 30 minutes, the other about every 90 minutes. They are also drawing blood every 4 hours from 2 different places.
The thing with Nocardiosis is that it forms sores, or 'lesions' and once you get all the puss off of/out of them (as in draining the one in his brain) the sore is still there. First... you are fighting to keep them from becoming puss filled again, then... getting them to heal however is extremely hard.
If you are healthy, and get a skin lesion, (and sometimes the lung lesion) you MAY have up to a 90% chance of a non-recurring infection, and total recovery.
THAT however is as good as it gets. THAT is if you are healthy going in. And THAT is if you DON'T get a brain lesion/brain abscess. Once you get that... the chances of a total recovery drop to 50/50.
Now we have Papa Fred with B Cell Lymphoma, and on Prednisone for a couple years now, both of which severely compromise his immune system. Needless to say... his chances at this point are not that good. We've honestly wished at this point that it WAS cancer and a brain tumor! I mean... that can be treated, and fairly successfully these days. THIS HOWEVER... it just keeps throwing everyone for loops.
They sent the (puss) sample (can't test the blood for it) off to a state (CDC) lab, in hopes of finding out which exact strain of Nocardia it is. Thought going in that it was Norcardia as NOTHING ELSE looks like it in a slide. We finally got confirmation yesterday that YES it is indeed what they thought. BUT... they STILL don't know the strain, and won't for maybe 2 more weeks.
The hope is once they know the strain, THEN they can swap from a shotgun approach with the antibiotics to more of a scalpel approach, and treat it with a single antibiotic that attacks just that strain.
Meanwhile, with all the steroids and antibiotics (not to mention the brain trying to recover from the trauma of the lesion) he's weakened to the point to where he's unable to communicate, sit, speak, eat, you name it.
Tuesday we spoke with his team about a feeding tube, simply because he's not eaten enough to keep a kitten alive since we lost him to constant sleep on the 20th. We were told that within 24 hours they'd go ahead and insert the nasal feeding tube, because he simply isn't getting enough nutrition. We thought Wednesday though that he might be getting better because we were able to spoon feed him a few bites of mushed chicken and some mashed potatoes, and he even managed to drink a few ounces of tea through a straw (with some prodding), although he never opened his eyes. Then Thursday I go back up there and he was so bad that it was night and day!!!! No feeding tube, and I could tell he was in pain, although still unconscious (for pretty much 24/7, save a few seconds here and there since back on the 20th). Late Thursday evening however they put in the feeding tube, which he somehow miraculously managed to pull out during the night.
Didn't get up there Friday (CarMomma's brothers wife is there from CA, she came in Thursday afternoon). Of course neither her, nor her husband (CarMomma's brother) are 'hands on' with him. They'd rather have a nurse, or pay someone to look after him. Where when WE are there we try at every moment that he might crack his eyes to get his attention, to move his arms around, hold his hands, talk to him, let him know we are there. He absolutely NEEDS that stimulation. This infection (or the aftermath of it at this point) is by and large the strangest thing I've had to deal with. (And BOTH my parents fought a battle with cancer, plus my father also had advanced alheimers there at the end.)
Talked Nana into coming to stay with us for a few days, just can't leave her sitting in her house all alone now with it into 3 weeks. I mean we've been visiting, and CarMomma goes by there daily (she works a mile away) but that's not enough at this point. Took Nana downtown today... BOY was I concerned all the way up there. (Didn't sleep worth a hoot last night worrying about it. Based on what I saw Thursday I was REALLY concerned before we went up there this morning.) Then this morning we got our daily call (after rounds) from the floor doctor, telling us what we figured was coming... all the steroids and antibiotics are working against his kidneys! (White counts are up, like that was a surprise of course.)
Today was the first time 'Nana' has seen him since he was sitting up at the hospital down here (before they moved him), and we feared for how that was going to evolve. Did I mention before she has dementia/early alzheimer's, and ZERO short term recollective memory????
He was the one that actually took care of HER up till 3 weeks ago! Going to the store, running errands, taking himself, and her to the doctors offices. (She doesn't drive.)
And of course when we get there... the nurse/tech was bathing him. Tubes in both arms, his nose, oxygen, wires, cath... just a bad scene. Nana didn't need to see it, and it really got her. Momma and I just gloved up, jumped in, (as we've been doing since week 1) and helped so we could get him done faster, new linens, new gown, fast as we could make it happen.
Good thing too! Because no sooner than we got him dressed and back under covers and the sister-in-law showed up... along with my daughter and her husband (to see her Granddaddy).
Had a master plan though... took me a new razor, a fresh can of shaving cream, got me some towels, and gave him an nice barbers shave. They all stood there and looked at me like I was some sort of space alien as I shaved 3 weeks of beard. Wasn't easy, but I think he knew what I was doing. He's NEVER gone more than a couple days without shaving, EVER. Did manage to get him stirred up a bit here and there, and he even reacted by turning his head towards my hand when I was shaving the back of his jaw/near his ears. At least he got to looking more like himself, even though it took me a while. Even fixed his hair, lips, and got some lotion on his hands and arms (while they all just watched).
It boggles my mind how the sister-in-law just sits there for two days, doesn't interact with him, and ends up with a 'paid' sitter from the hospital sitting with him. I mean maybe she doesn't know how. :dunno: But at this point... we need a miracle, and he needs to know we're there. Don't know what I can do about the miracle, but I CAN let him know when we're there.
OTOH... I've seen miracles. Been there, done that... it happens! My mother... they gave her .8% of making it more than 30~45 days. Next thing they knew... 4 years and 5 months had gone by.
Pffffffttt... the fact that he even contracted this thing is a miracle!
How much so you wonder?
Well... the chances of getting Nocardia run from .00015% to .00031%!
Anyhow... it's been another week. Today was actually better than Wednesday, and especially Thursday. (At least he was vocalizing in his sleep, coughing a bit, fidgeting, and *sometimes* reacting to touch.) Nana can't comprehend the status of it all, just the finality is all that she can think of, then keeps asking over and over... "will he ever get any better than this". (Then she can't remember the answer(s) we tell her.) As if there is switch you can just turn off and he'd be gone. (Because she of course doesn't want to see him suffer.)
This next week (and hopefully two) will tell us if the lesion(s) are healing, and the infection isn't returning. The brain is a slow thing to come around for sure, ESPECIALLY with such trauma, and his age. IF the infection doesn't come back (slim odds I know, but it's all we have) within the next week (or two) we'll hopefully start to look towards a positive outcome.
At this point... it's not in our hands.
And THAT is the hardest part of it all. :'(
This thing has gone from shocking, to bad, to possibly better, to a rollercoaster that never tops the hill, never goes down, just goes up, starts to level a bit, then keeps going up.
Based on the brain abscess, the initial thought was that he had contracted "Nocardia", or what it turns into, once if forms lesions (infections)... "Nocardiosis".
It can start as a skin sore, and if not caught in time, migrate to the lung(s). Then if THAT isn't caught in time, it can move to the brain, as a brain abscess. It is SO RARE that only 500~1000 people ever get it in the US per year. It's also so rare that they don't have specific antibiotics to fight it. Instead, they are giving him a LOT of very strong ones via IV, different ones in each arm, one changing out every 30 minutes, the other about every 90 minutes. They are also drawing blood every 4 hours from 2 different places.
The thing with Nocardiosis is that it forms sores, or 'lesions' and once you get all the puss off of/out of them (as in draining the one in his brain) the sore is still there. First... you are fighting to keep them from becoming puss filled again, then... getting them to heal however is extremely hard.
If you are healthy, and get a skin lesion, (and sometimes the lung lesion) you MAY have up to a 90% chance of a non-recurring infection, and total recovery.
THAT however is as good as it gets. THAT is if you are healthy going in. And THAT is if you DON'T get a brain lesion/brain abscess. Once you get that... the chances of a total recovery drop to 50/50.
Now we have Papa Fred with B Cell Lymphoma, and on Prednisone for a couple years now, both of which severely compromise his immune system.
Needless to say... his chances at this point are not that good. We've honestly wished at this point that it WAS cancer and a brain tumor! I mean... that can be treated, and fairly successfully these days. THIS HOWEVER... it just keeps throwing everyone for loops.They sent the (puss) sample (can't test the blood for it) off to a state (CDC) lab, in hopes of finding out which exact strain of Nocardia it is. Thought going in that it was Norcardia as NOTHING ELSE looks like it in a slide. We finally got confirmation yesterday that YES it is indeed what they thought. BUT... they STILL don't know the strain, and won't for maybe 2 more weeks.
The hope is once they know the strain, THEN they can swap from a shotgun approach with the antibiotics to more of a scalpel approach, and treat it with a single antibiotic that attacks just that strain.
Meanwhile, with all the steroids and antibiotics (not to mention the brain trying to recover from the trauma of the lesion) he's weakened to the point to where he's unable to communicate, sit, speak, eat, you name it.
Tuesday we spoke with his team about a feeding tube, simply because he's not eaten enough to keep a kitten alive since we lost him to constant sleep on the 20th. We were told that within 24 hours they'd go ahead and insert the nasal feeding tube, because he simply isn't getting enough nutrition. We thought Wednesday though that he might be getting better because we were able to spoon feed him a few bites of mushed chicken and some mashed potatoes, and he even managed to drink a few ounces of tea through a straw (with some prodding), although he never opened his eyes. Then Thursday I go back up there and he was so bad that it was night and day!!!! No feeding tube, and I could tell he was in pain, although still unconscious (for pretty much 24/7, save a few seconds here and there since back on the 20th). Late Thursday evening however they put in the feeding tube, which he somehow miraculously managed to pull out during the night.
Didn't get up there Friday (CarMomma's brothers wife is there from CA, she came in Thursday afternoon). Of course neither her, nor her husband (CarMomma's brother) are 'hands on' with him. They'd rather have a nurse, or pay someone to look after him. Where when WE are there we try at every moment that he might crack his eyes to get his attention, to move his arms around, hold his hands, talk to him, let him know we are there. He absolutely NEEDS that stimulation. This infection (or the aftermath of it at this point) is by and large the strangest thing I've had to deal with. (And BOTH my parents fought a battle with cancer, plus my father also had advanced alheimers there at the end.)
Talked Nana into coming to stay with us for a few days, just can't leave her sitting in her house all alone now with it into 3 weeks. I mean we've been visiting, and CarMomma goes by there daily (she works a mile away) but that's not enough at this point. Took Nana downtown today... BOY was I concerned all the way up there. (Didn't sleep worth a hoot last night worrying about it. Based on what I saw Thursday I was REALLY concerned before we went up there this morning.) Then this morning we got our daily call (after rounds) from the floor doctor, telling us what we figured was coming... all the steroids and antibiotics are working against his kidneys! (White counts are up, like that was a surprise of course.)
Today was the first time 'Nana' has seen him since he was sitting up at the hospital down here (before they moved him), and we feared for how that was going to evolve. Did I mention before she has dementia/early alzheimer's, and ZERO short term recollective memory????
He was the one that actually took care of HER up till 3 weeks ago! Going to the store, running errands, taking himself, and her to the doctors offices. (She doesn't drive.)
And of course when we get there... the nurse/tech was bathing him. Tubes in both arms, his nose, oxygen, wires, cath... just a bad scene. Nana didn't need to see it, and it really got her. Momma and I just gloved up, jumped in, (as we've been doing since week 1) and helped so we could get him done faster, new linens, new gown, fast as we could make it happen.
Good thing too! Because no sooner than we got him dressed and back under covers and the sister-in-law showed up... along with my daughter and her husband (to see her Granddaddy).
Had a master plan though... took me a new razor, a fresh can of shaving cream, got me some towels, and gave him an nice barbers shave. They all stood there and looked at me like I was some sort of space alien as I shaved 3 weeks of beard. Wasn't easy, but I think he knew what I was doing. He's NEVER gone more than a couple days without shaving, EVER. Did manage to get him stirred up a bit here and there, and he even reacted by turning his head towards my hand when I was shaving the back of his jaw/near his ears. At least he got to looking more like himself, even though it took me a while. Even fixed his hair, lips, and got some lotion on his hands and arms (while they all just watched).
It boggles my mind how the sister-in-law just sits there for two days, doesn't interact with him, and ends up with a 'paid' sitter from the hospital sitting with him. I mean maybe she doesn't know how. :dunno: But at this point... we need a miracle, and he needs to know we're there. Don't know what I can do about the miracle, but I CAN let him know when we're there.
OTOH... I've seen miracles. Been there, done that... it happens! My mother... they gave her .8% of making it more than 30~45 days. Next thing they knew... 4 years and 5 months had gone by.
Pffffffttt... the fact that he even contracted this thing is a miracle!
How much so you wonder?
Well... the chances of getting Nocardia run from .00015% to .00031%!
Anyhow... it's been another week. Today was actually better than Wednesday, and especially Thursday. (At least he was vocalizing in his sleep, coughing a bit, fidgeting, and *sometimes* reacting to touch.) Nana can't comprehend the status of it all, just the finality is all that she can think of, then keeps asking over and over... "will he ever get any better than this". (Then she can't remember the answer(s) we tell her.) As if there is switch you can just turn off and he'd be gone. (Because she of course doesn't want to see him suffer.)
This next week (and hopefully two) will tell us if the lesion(s) are healing, and the infection isn't returning. The brain is a slow thing to come around for sure, ESPECIALLY with such trauma, and his age. IF the infection doesn't come back (slim odds I know, but it's all we have) within the next week (or two) we'll hopefully start to look towards a positive outcome.
At this point... it's not in our hands.
And THAT is the hardest part of it all. :'(
Mike Honcho
New member
- Apr 20, 2015
- 1,264
- 0
Wow. What an adventure. More prayers coming your way.
Dear Cardaddy and Carmomma friends
It is pretty difficult to read your post without some unwanted tears popping out in my eyes.
You guys are in my prayers, hoping it will travel several thousand miles to your family.
It is all in God's hands, as always have been, may you find the strength needed to go through this difficult time.
Peace, love and faith.
RPM
It is pretty difficult to read your post without some unwanted tears popping out in my eyes.
You guys are in my prayers, hoping it will travel several thousand miles to your family.
It is all in God's hands, as always have been, may you find the strength needed to go through this difficult time.
Peace, love and faith.
RPM
cardaddy
New member
- Nov 20, 2012
- 3,937
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- Thread starter
- #53
Thank you all... again... for your hopes and prayers.
You know... we all hope when our time comes, it'll be fast, easy, and as painless as possible. This one, with Papa Fred... hit us like a freight train! BTW... he retired from Norfolk Southern, where he put in almost 40 years on those freight trains that he, to this day, loves very much. They bought him out with less than 2 years, which he took, but then regretted it because he loved it so much.
RPM_BR, thanks to you my friend for feeling what I'm feeling... and sharing that here. Trust me when I say, I *really* understand, and appreciate your words.
Today has been a hard one for me, waterworks all morning. I was the one that had the blessing of sharing his last conversations with him. I was the one he told the things that he wanted someone to hear, before he (I think knew) wouldn't be able to say anymore. And it was ME that sat there with him through that first week in the hospital (when his own son took 10 days to show up, and didn't get here till after he was in recovery from the brain surgery) and was able to ask him things that I wish I'd asked my own father, 10 years ago come June.
Today my wife had to make the decision to send him to Hospice. Tomorrow morning she's going to sign the papers at the same place my father was, those 10 years ago. And AGAIN... his son isn't even in the state! (He's expecting to come in at the last minute from what he's said to us.)
Part of it (him not being here) literally infuriates me.... while another part of it makes me sad for him, knowing that one day, in the VERY near future, he'll wish he was sitting with his Daddy and having another conversation, he'll WISH he had those days that I had, to sit, to listen, to have the heart to heart conversations that I was able to share with him before he drifted off 2 weeks ago today. That Tuesday the 19th he was able to sit in the chair at the hospital for 3 hours that afternoon after his second lung biopsy, had his dinner, Deb and her Mother came by, and once he tired we tucked him in, and said goodnight. He's not been able to sit, or speak like that since.
So tomorrow he's moving down here closer, and it'll be his final move. We have no idea how long he'll hold up, as he's not getting a lot worse at a rapid rate, just that he's not responding to treatment. This crazy Nocardia infection is as nasty as anything you can imagine!!! It just will not respond, and takes most that it infects. But we do know that Papa Fred will be comfortable, will not be in pain, and his wishes will be respected just as he planned.
I cannot express the emotion at this time. I honestly don't know if I can walk through those doors again.
Thank you all again for your kind thoughts, prayers, and best wishes.
Tony & Deb
You know... we all hope when our time comes, it'll be fast, easy, and as painless as possible. This one, with Papa Fred... hit us like a freight train! BTW... he retired from Norfolk Southern, where he put in almost 40 years on those freight trains that he, to this day, loves very much. They bought him out with less than 2 years, which he took, but then regretted it because he loved it so much.
RPM_BR, thanks to you my friend for feeling what I'm feeling... and sharing that here. Trust me when I say, I *really* understand, and appreciate your words.
Today has been a hard one for me, waterworks all morning. I was the one that had the blessing of sharing his last conversations with him. I was the one he told the things that he wanted someone to hear, before he (I think knew) wouldn't be able to say anymore. And it was ME that sat there with him through that first week in the hospital (when his own son took 10 days to show up, and didn't get here till after he was in recovery from the brain surgery) and was able to ask him things that I wish I'd asked my own father, 10 years ago come June.
Today my wife had to make the decision to send him to Hospice. Tomorrow morning she's going to sign the papers at the same place my father was, those 10 years ago. And AGAIN... his son isn't even in the state! (He's expecting to come in at the last minute from what he's said to us.)
Part of it (him not being here) literally infuriates me.... while another part of it makes me sad for him, knowing that one day, in the VERY near future, he'll wish he was sitting with his Daddy and having another conversation, he'll WISH he had those days that I had, to sit, to listen, to have the heart to heart conversations that I was able to share with him before he drifted off 2 weeks ago today. That Tuesday the 19th he was able to sit in the chair at the hospital for 3 hours that afternoon after his second lung biopsy, had his dinner, Deb and her Mother came by, and once he tired we tucked him in, and said goodnight. He's not been able to sit, or speak like that since.
So tomorrow he's moving down here closer, and it'll be his final move. We have no idea how long he'll hold up, as he's not getting a lot worse at a rapid rate, just that he's not responding to treatment. This crazy Nocardia infection is as nasty as anything you can imagine!!! It just will not respond, and takes most that it infects. But we do know that Papa Fred will be comfortable, will not be in pain, and his wishes will be respected just as he planned.
I cannot express the emotion at this time. I honestly don't know if I can walk through those doors again.
Thank you all again for your kind thoughts, prayers, and best wishes.
Tony & Deb
dad07
New member
- Nov 9, 2010
- 4,227
- 0
Tony my brother,
I am so sorry to here this news....haven't heard from you in awhile and I see why. Please know that our thoughts and prayers are with you and your family my friend.
Your not alone.......I'm just a phone call away, if I can do ANYTHING!
hang in there brother we are here for you.
Tim And Cheryl
PGBCruiser
New member
- Mar 21, 2015
- 64
- 0
Just read this for the first time, from first post to most recent.
Praying for your family, for you. Stay strong in faith; and trust that God is the ultimate physician. HIs will is best; and your example of love and dedication is inspiring.
Take care of yourself through all of this; and I'm sure you know our prayers will be with you.
Peter
Praying for your family, for you. Stay strong in faith; and trust that God is the ultimate physician. HIs will is best; and your example of love and dedication is inspiring.
Take care of yourself through all of this; and I'm sure you know our prayers will be with you.
Peter
Priyaka
New member
- Dec 1, 2015
- 159
- 0
Your love for each other and faith in God will guide you. Prayers sent for you and your family.
oldmodman
New member
- Sep 25, 2007
- 2,563
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Seems like everyone I know is, or has gone through this.
My Mom was diagnosed with advanced lung cancer on the 24th of December. She started radiation on the 26th. She lasted another three months. She was hospitalized on a Monday and it was decided that Hospice care was best for her but she died an hour later.
I still feel that she would have a better end if she had refused all treatment. The radiation took away any chance at a decent last few months.
I hope his discomfort is better controlled than my Mom's.
My Mom was diagnosed with advanced lung cancer on the 24th of December. She started radiation on the 26th. She lasted another three months. She was hospitalized on a Monday and it was decided that Hospice care was best for her but she died an hour later.
I still feel that she would have a better end if she had refused all treatment. The radiation took away any chance at a decent last few months.
I hope his discomfort is better controlled than my Mom's.