Ok - so I finally came back to the blog to notice: WOAH! According to this, we're still in the hospital. Oopsie.
Here's the current scoop: We have been home for a few weeks. Ian is still on antibiotics, but there is currently no sign of infection. We will hopefully discontinue them in a week or so. Yay!
Physically he is stronger ... getting moving again. He has abandoned the walker and prefers to teeter along on his own. I still like to flank him because of balance concerns, but he has been known to trek to the bathroom and back without an escort. Progress. We've made it to church two Sundays in a row.
Mentally, cognitively, it's an uphill battle with some valleys. (In that metaphor, the valleys are a GOOD thing - less resistance.) Anyway, his occupational and speech therapists primarily work with him on sequencing events, naming, memory items ... that sort of thing. Last week it was REALLY a struggle to count money. An analog clock made no sense (think teaching a child what "a quarter past" means). This week the money thing went more smoothly; he could brain the values AND the adding. Yay! He can still only name about five animals, but those seem to come a little more quickly, so we'll call that progress.
Next on the agenda: tumor battle. No one can say definitively if his current cognitive issues are from the multitude of brain-poking that's been going on these last 6 months, or from the tumor itself (which is in the visual/language processing area). It's possible CSF pools, goo pools, infection pools, pressure (pools?), tissue swellage and downright jostling could account for some of the mental deficit. It could also be that undetectable, microscopic growth is causing problems. So once the antibiotics wraps up and we're satisfied the new shunt is functioning adequately, it's time for chemo again.
HE IS HOME AT CHRISTMAS, which is a present in itself.
I want to thank everyone who has given to us this season, in the hopes that we are able enjoy a precious Christmas. Every single item and monetary gift has been prayed over and treasured and hopefully put to good use. This will not be/has not been an excuse to lavish the kids with unnecessary things, and we won't make the over-compensating mistake, but it's been a relief to know that yes, we can go ahead and get those much-desired items. There will be unwrapping, cinnamon rolls, and laughter. And you've all been a big part of that.
As far as Nurse Rachel goes, I look forward to hanging up the scrubs. I prefer Wife. I have imagined many blog posts but have not written them (including one where I describe all the things I do in a day, to put in writing and validate that I am, in fact, busy ... but I was too busy to actually write it. How meta.), but please know that we are here, we have peace, and we are ready for our next adventure. This is the long haul part of illness ... the in-between crises time span. Aside from the Christmas festivities, we are open to visits and occasional field trips. Please keep us in mind if you are so inclined! :)
Merry Christmas and much love.
Tuesday, December 22, 2015
Sunday, December 6, 2015
You Keep Using That Word: Caregiver Blog Party
A lot of us are care-givers.
Parents of young children are obvious examples of caregivers: responsible for someone who has little to no ability to care for himself.
Pet owners are also caregivers: making sure Fido has his nibblets and walkies and shelter, etc.
Nurses, therapists, counselors, hospice workers ... now we're getting into paid occupations of caring for the sick or injured.
Family Caregiver is a unique role: caring for a family member with chronic illness, disability or injury. We didn't train for this service, and despite our intense love for our carees, it can be confusing at best and traumatic at worst to attend to their emotional, physical and spiritual needs 24/7.
This week, check out my fellow bloggers from Caregiving.com, my digital home for coping with the challenges I face in this season of life. We're a merry band of misfits, venting, asking, sharing, and cheering one another on. Perhaps you have reason to join us - please feel welcome to do so.
Holiday Progressive Blog Party
Parents of young children are obvious examples of caregivers: responsible for someone who has little to no ability to care for himself.
Pet owners are also caregivers: making sure Fido has his nibblets and walkies and shelter, etc.
Nurses, therapists, counselors, hospice workers ... now we're getting into paid occupations of caring for the sick or injured.
Family Caregiver is a unique role: caring for a family member with chronic illness, disability or injury. We didn't train for this service, and despite our intense love for our carees, it can be confusing at best and traumatic at worst to attend to their emotional, physical and spiritual needs 24/7.
This week, check out my fellow bloggers from Caregiving.com, my digital home for coping with the challenges I face in this season of life. We're a merry band of misfits, venting, asking, sharing, and cheering one another on. Perhaps you have reason to join us - please feel welcome to do so.
Holiday Progressive Blog Party
Monday, November 30, 2015
Even Less Sugar: It's Time For a Game of "What's That Goo" (and other tv shows that are my life right now)
Answers: "The plot thickens," and "I've never seen this before."
Question: What are "things you never want to hear from your brain surgeon following surgery?"
Last week, our medical team concluded that Ian's shunt was not working properly. This is not an uncommon occurrence in shunts, and they are frequently adjusted, replaced, etc. Not particularly worrisome to them, although obviously disconcerting and inconvenient for us. (Have I mentioned before how un-cool it is when Ian can't brain? I'd rather evacuate his bowels for him than watch him try and fail to come up with the street he lives on. This is not hyperbole.)
At first, they were contemplating starting at the bottom, drain section of the shunt to determine the site of the blockage. Gook in the drain? replace that part, but leave the brain part alone.
However as we got closer to the procedure, the surgeon decided it was better to replace the whole thing, assuming that if there was a clog (basically proteins in the csf/blood attach themselves) in the drain, there was likely to be detritus on the brain end. And heck, while we're in there, let's get a darned good look at this "pooling goo" we think could be infection or maybe it's not. So with a teeny-tiny camera, the doctor poked around to see what he could see in the ventricles.
Dr. A was able to extract a sample of the "stuff," which he described as "cottony, white, puss-like stuff," that was unlike anything he'd seen before (this is too simple a retelling, as he went on to describe how he HAS seen stuff LIKE this, but it's been in fairly disease-ridden patients who are symptomatic of infection and metastases). Still, the statement remains: he'd never seen this before. He CALLED aguy fellow brain surgeon. During surgery. He sent a sample off to the lab. When the results came back "no infection," he WALKED a sample down to the lab to watch them test it himself (all of this shenanigans meant surgery took much longer than we'd expected, and we were concerned when they called us to say they were in the midst of this pathology stuff when we'd expected him to be sewn up and in recovery from a shunt replacement procedure). Still: no infection detected.
So we're back to Goo Theory: the stuff that's up there, clinging to the ventricles and the old shunt, is detritus. It's goo. It's puss, scab, whatever-material, but it's not infection and as far as we can tell, ALSO not tumor.
Ian got another small brain wash, and the surgeons installed an external drain (see previous posts - we had one, we faced the possibility of having one long-term, etc.). They chose this route so we could be ABSOLUTELY CERTAIN that no infection remains before installing new hardware. As in all infection testing, even with initial negatives, things could grow later on; so the goal is to be a comfortable distance from surgery to be confident nothing is alive up there and growing or able to grow, say, once we discontinue antibiotics.
So it was back to the ICU; when that Cheers guy sang about wanting to go where everybody knows your name, I DON'T think he meant rolling into the Neuro ICU and having the nurses all shout, "Ian!" ... but that's kinda how it is up there for us. They're glad to see us, but of course don't want to see us. And the feeling is mutual.
Today, after several days of the external drain, he'll have a new shunt placed. Then we'll have some recovery from that, and close monitoring of his cognitive state: we've experienced Ian's brain on high pressure, and it's not good.
We COULD be discharged as early as Wednesday, however at this point, with surgery so late in the day, I'm guessing more like Friday.
So: Who Wants To Be a Brain Surgeon? Not this girl.
Who Wants To Be a Nurse? Not me, but I can do it if pressed.
Who Wants To Get This Infection Stuff Behind Us So We Can Kick Cancer's Butt Again?
ALL OF US.
Question: What are "things you never want to hear from your brain surgeon following surgery?"
Last week, our medical team concluded that Ian's shunt was not working properly. This is not an uncommon occurrence in shunts, and they are frequently adjusted, replaced, etc. Not particularly worrisome to them, although obviously disconcerting and inconvenient for us. (Have I mentioned before how un-cool it is when Ian can't brain? I'd rather evacuate his bowels for him than watch him try and fail to come up with the street he lives on. This is not hyperbole.)
At first, they were contemplating starting at the bottom, drain section of the shunt to determine the site of the blockage. Gook in the drain? replace that part, but leave the brain part alone.
However as we got closer to the procedure, the surgeon decided it was better to replace the whole thing, assuming that if there was a clog (basically proteins in the csf/blood attach themselves) in the drain, there was likely to be detritus on the brain end. And heck, while we're in there, let's get a darned good look at this "pooling goo" we think could be infection or maybe it's not. So with a teeny-tiny camera, the doctor poked around to see what he could see in the ventricles.
Dr. A was able to extract a sample of the "stuff," which he described as "cottony, white, puss-like stuff," that was unlike anything he'd seen before (this is too simple a retelling, as he went on to describe how he HAS seen stuff LIKE this, but it's been in fairly disease-ridden patients who are symptomatic of infection and metastases). Still, the statement remains: he'd never seen this before. He CALLED a
So we're back to Goo Theory: the stuff that's up there, clinging to the ventricles and the old shunt, is detritus. It's goo. It's puss, scab, whatever-material, but it's not infection and as far as we can tell, ALSO not tumor.
Ian got another small brain wash, and the surgeons installed an external drain (see previous posts - we had one, we faced the possibility of having one long-term, etc.). They chose this route so we could be ABSOLUTELY CERTAIN that no infection remains before installing new hardware. As in all infection testing, even with initial negatives, things could grow later on; so the goal is to be a comfortable distance from surgery to be confident nothing is alive up there and growing or able to grow, say, once we discontinue antibiotics.
So it was back to the ICU; when that Cheers guy sang about wanting to go where everybody knows your name, I DON'T think he meant rolling into the Neuro ICU and having the nurses all shout, "Ian!" ... but that's kinda how it is up there for us. They're glad to see us, but of course don't want to see us. And the feeling is mutual.
Today, after several days of the external drain, he'll have a new shunt placed. Then we'll have some recovery from that, and close monitoring of his cognitive state: we've experienced Ian's brain on high pressure, and it's not good.
We COULD be discharged as early as Wednesday, however at this point, with surgery so late in the day, I'm guessing more like Friday.
So: Who Wants To Be a Brain Surgeon? Not this girl.
Who Wants To Be a Nurse? Not me, but I can do it if pressed.
Who Wants To Get This Infection Stuff Behind Us So We Can Kick Cancer's Butt Again?
ALL OF US.
Friday, November 20, 2015
Even Less Sugar: Home Care, Therapy, and Back to the Hopsital
The problem with being a good communicator and a constant updater is that when you don't update people go ... "Hello? What's the word?"
To be quite honest, I've spent most of the last few weeks asleep on the couch, razed only for meals and medication times. Exhaustion -- depression -- whatever. I can't concentrate long enough to write an email, let alone a blog post, especially with the nebulous and fractured information I have to work with.
His occupational therapist was happy with his progress enough to discontinue this week. His speech therapist was working with him, carefully helping him navigate word finding and memory issues. His physical therapist was getting him MUCH stronger than he had been in the hospital – he was able to walk to the bathroom (downstairs) on his own from his hospital bed in the living room. We made tandem treks upstairs to shower.
However, starting a few days ago, he had bouts of confusion – nothing monumental but still different and less cognition. Two days ago things went downhill quickly as he was basically talking nonsense, repeating that nonsense over and over ("I need to put the windows in order"), and unable to follow direction (to lie down in his bed, for instance, did not make sense to him. He couldn't understand what I was saying, and he didn't know how to do it when he did). He also threw up – all signs of something bad going on in his brain. We headed to the hospital.
Yesterday (the day after admission through the ER the night before), doctors tapped his shunt to test the cerebral spinal fluid for infection. They've seen what they consider to be possibly infection on MRIs – but it also could be other things. It is not tumor material; the current areas of concern are not where the tumor is at this point. Despite being on antibiotics for four? months, the infection? or whatever it is, has not been eliminated.
The initial results were extremely low white blood count which is a good thing. The 24 hour turnaround is also favorable. There will be another check at 48 hours. They've changed one of his antibiotics to something else. Trial and error? Possibly.
The issue then, is: What is causing the (current) problem? What's that area(s) we see on the films? The options seem to be 1. intracranial pressure (i.e. swelling and fluid presence and the brain's ability inability to go back to normal size as a result of all of the trauma, or infection, or both; or 2. infection which has not been eradicated by the antibiotics, or is new and different than the one we've treated with them before, or detritus from breakdown of dead tissue and basically a pool of scabs (you're welcome).
If there is infection ON the shunt, the doctor says it will not respond to antibiotics; it will have to come out, with an external drain to replace it. Complications: possible increased/different infection introduced, healing time and potential for infection as a result of THAT process, and the external drain would be an indefinite fix ... a (VERY) gradual process of changing the speed/volume of the drain until pressure is stable and a shunt can be reinstalled. This could mean a year-long hospital stay, no joke, which has its own complications, namely EXPOSURE TO INFECTION AT THE HOSPITAL.
Also on the table would be another brain washing as before. This carries its own potential serious risks i.e. another brain surgery skin healing etc. infection etc. etc. Also mentioned has been a direct injection of antibiotics to the brain, however that has its limitations as well. I think this is kind of like three rocks and three hard places.
I came into the hospital room today to a bright, sunny room, Ian sitting up in a regular/lounge chair, eating his breakfast, smiling. At some point later on, he started to say odd things and make less sense.* I decided that we needed to talk while he still had the capacity to understand and communicate ... about these options, and what he thought about doing the most aggressive things vs. a more conservative approach, were we given the choice and he was at his current mental ability. That conversation will remain private, but it did involve tears.
Tonight doctors installed a lumbar drain, as they've done before, to lessen the excess pressure on the brain. We've had varying degrees of success with these in the past, so I'm not holding out much hope, but we'll wait and see... Unbelievably, because of this wait-and-see stance, they're talking about sending him home by Monday.
He's being volleyed back to me, to determine if things go awry enough to head back to the hospital. Oh joy.
* 1. He shouted "RELAY" into the hallway, to/at no one, because he said "there's a kid out there who isn't supposed to be there."
2. Because a nurse was reading menu options to a patient to choose from, he told me they were having a buffet out there and he wondered why?"
3. He wriggled his feet and meowed because he was playing with the cat, who he argued with me about actually being there.
4. When PT gave him directions, he agreed and then did something completely different ... and even when he seemed to hear and understand, he wasn't able to get his body to cooperate.
-- Trust me, there are rationalizations that can be made for some of these things, but that first one? NO WIGGLE ROOM. He's not right. He's not tired, he's confused.
--- "He seems okay to me," is something you'd likely say if you saw him ... the man uses $5 words. He has a manner about him that exudes confidence and health. But HIS BRAIN IS BEING SQUEEZED SO BIZARRE STUFF COMES OUT OF HIS MOUTH. Just because he describes something using "multitude" and "numerous" and "exceeding" doesn't mean he's not telling you about credit cards and rain coats ?!? (which he did, tonight).
To be quite honest, I've spent most of the last few weeks asleep on the couch, razed only for meals and medication times. Exhaustion -- depression -- whatever. I can't concentrate long enough to write an email, let alone a blog post, especially with the nebulous and fractured information I have to work with.
His occupational therapist was happy with his progress enough to discontinue this week. His speech therapist was working with him, carefully helping him navigate word finding and memory issues. His physical therapist was getting him MUCH stronger than he had been in the hospital – he was able to walk to the bathroom (downstairs) on his own from his hospital bed in the living room. We made tandem treks upstairs to shower.
However, starting a few days ago, he had bouts of confusion – nothing monumental but still different and less cognition. Two days ago things went downhill quickly as he was basically talking nonsense, repeating that nonsense over and over ("I need to put the windows in order"), and unable to follow direction (to lie down in his bed, for instance, did not make sense to him. He couldn't understand what I was saying, and he didn't know how to do it when he did). He also threw up – all signs of something bad going on in his brain. We headed to the hospital.
Yesterday (the day after admission through the ER the night before), doctors tapped his shunt to test the cerebral spinal fluid for infection. They've seen what they consider to be possibly infection on MRIs – but it also could be other things. It is not tumor material; the current areas of concern are not where the tumor is at this point. Despite being on antibiotics for four? months, the infection? or whatever it is, has not been eliminated.
The initial results were extremely low white blood count which is a good thing. The 24 hour turnaround is also favorable. There will be another check at 48 hours. They've changed one of his antibiotics to something else. Trial and error? Possibly.
The issue then, is: What is causing the (current) problem? What's that area(s) we see on the films? The options seem to be 1. intracranial pressure (i.e. swelling and fluid presence and the brain's ability inability to go back to normal size as a result of all of the trauma, or infection, or both; or 2. infection which has not been eradicated by the antibiotics, or is new and different than the one we've treated with them before, or detritus from breakdown of dead tissue and basically a pool of scabs (you're welcome).
If there is infection ON the shunt, the doctor says it will not respond to antibiotics; it will have to come out, with an external drain to replace it. Complications: possible increased/different infection introduced, healing time and potential for infection as a result of THAT process, and the external drain would be an indefinite fix ... a (VERY) gradual process of changing the speed/volume of the drain until pressure is stable and a shunt can be reinstalled. This could mean a year-long hospital stay, no joke, which has its own complications, namely EXPOSURE TO INFECTION AT THE HOSPITAL.
Also on the table would be another brain washing as before. This carries its own potential serious risks i.e. another brain surgery skin healing etc. infection etc. etc. Also mentioned has been a direct injection of antibiotics to the brain, however that has its limitations as well. I think this is kind of like three rocks and three hard places.
I came into the hospital room today to a bright, sunny room, Ian sitting up in a regular/lounge chair, eating his breakfast, smiling. At some point later on, he started to say odd things and make less sense.* I decided that we needed to talk while he still had the capacity to understand and communicate ... about these options, and what he thought about doing the most aggressive things vs. a more conservative approach, were we given the choice and he was at his current mental ability. That conversation will remain private, but it did involve tears.
Tonight doctors installed a lumbar drain, as they've done before, to lessen the excess pressure on the brain. We've had varying degrees of success with these in the past, so I'm not holding out much hope, but we'll wait and see... Unbelievably, because of this wait-and-see stance, they're talking about sending him home by Monday.
He's being volleyed back to me, to determine if things go awry enough to head back to the hospital. Oh joy.
* 1. He shouted "RELAY" into the hallway, to/at no one, because he said "there's a kid out there who isn't supposed to be there."
2. Because a nurse was reading menu options to a patient to choose from, he told me they were having a buffet out there and he wondered why?"
3. He wriggled his feet and meowed because he was playing with the cat, who he argued with me about actually being there.
4. When PT gave him directions, he agreed and then did something completely different ... and even when he seemed to hear and understand, he wasn't able to get his body to cooperate.
-- Trust me, there are rationalizations that can be made for some of these things, but that first one? NO WIGGLE ROOM. He's not right. He's not tired, he's confused.
--- "He seems okay to me," is something you'd likely say if you saw him ... the man uses $5 words. He has a manner about him that exudes confidence and health. But HIS BRAIN IS BEING SQUEEZED SO BIZARRE STUFF COMES OUT OF HIS MOUTH. Just because he describes something using "multitude" and "numerous" and "exceeding" doesn't mean he's not telling you about credit cards and rain coats ?!? (which he did, tonight).
Wednesday, November 4, 2015
Even Less Sugar: back to that rock and hard place thing
Ian has had two appointments this week, including an MRI.
According to the pictures, he has EITHER a significant infection (still) in his brain OR the tumor has grown.
Here's the problem: the only way to monitor the infection and the tumor is visually via MRI. On contrast film TUMOR MATERIAL AND INFECTION LOOK THE SAME. We can't treat the tumor unless we're confident the infection is taken care of (and I don't know to what degree - 100% or "mostly percent" - fuzzy and vague). But we don't know what part of the blob is infection and what part is tumor.
So treatment remains the same: heavy antibiotics, monitoring blood counts, vitals, home health care and therapy, and WAIT.... *
For the infection to quell? for the tumor to swell? for the snow to fall ....
The doctor (Dr. Snazzy Stethoscope) said treating this thing is "an ART." Not a science. Yeesh.
Fuzzy. Guessing. Trying. Waiting.
He also said Ian was an inspiration.
I tend to agree.
*(also blood clots and high blood pressure and tremor and weakness and confusion and dis-coordination and headache)
According to the pictures, he has EITHER a significant infection (still) in his brain OR the tumor has grown.
Here's the problem: the only way to monitor the infection and the tumor is visually via MRI. On contrast film TUMOR MATERIAL AND INFECTION LOOK THE SAME. We can't treat the tumor unless we're confident the infection is taken care of (and I don't know to what degree - 100% or "mostly percent" - fuzzy and vague). But we don't know what part of the blob is infection and what part is tumor.
So treatment remains the same: heavy antibiotics, monitoring blood counts, vitals, home health care and therapy, and WAIT.... *
For the infection to quell? for the tumor to swell? for the snow to fall ....
The doctor (Dr. Snazzy Stethoscope) said treating this thing is "an ART." Not a science. Yeesh.
Fuzzy. Guessing. Trying. Waiting.
He also said Ian was an inspiration.
I tend to agree.
*(also blood clots and high blood pressure and tremor and weakness and confusion and dis-coordination and headache)
Sunday, November 1, 2015
Seven Weeks Till Christmas?!
If you happen to need some Christmas gifts, a dear friend has set up this vendor sale to benefit our family. Wine, Women and Fundraising Vendor Show.
Saturday, October 24, 2015
Even Less Sugar: Caregiving Day One: Homecoming
I am not complaining. All of the things worked out fine, and we are fine, and Ian is home. I just wanted to give you a glimpse.
Yesterday: Laundry. Making the hospital bed that's in the living room. Potty chair and wheel chairs are ready to go. Bath chair arrives (thanks, friend!).
Mom meets me at the rehab center to get Ian. This round, I'm giving two types of antibiotics at home. One requires 4 syringes (2 saline, 1 heprin, 1 med, which needs to be kept cold and removed from the fridge 30 minutes prior). The other requires a very slow push, so it uses a giant syringe and a motorized pump. I receive a demonstration before leaving the hospital.
At 1:30 p, the school calls: Ezra is having "difficult bathroom issues" and needs to be picked up. We wheel Ian and his walker to the car, and with some difficulty load him up. Then we head to the school and get Ezra, who is "uncomfortable" but well enough. We cram in and head home. The home health nurse calls to say she'll be at the house around 5p.
IV medicine is due at 4. It won't be delivered till 4:30p ... okay. There's wiggle room. We're supposed to wait for the nurse to arrive to do the first home dosage.
The meds show at 5p. Still okay. I unpack the refrigerated box and bag of boxes of bags and meds and supplies and organize them a bit. I realize: no magic pump.
Maybe the nurse brings it with her? Since I haven't been "checked off" on using it?
I should have known better, based on last time: meds are one folks, care is another.
Nurse shows at 6p (we're now at 2 hrs past due): no pump.
She calls, they're "sending it out," which means we'll have it by 9p. She sticks around for the meds I CAN do, and we do some math:
The antibiotics are on an 8-hour schedule. They are now staggered, 3 hours apart, and both have started later than the schedule. This means we need to fuss with the dosing times, using that aforementioned wiggle room to get them lined up together and properly spaced. It looks like this: (C and V being the two types; remember that "V" uses the pump, and therefore takes 1.5 hrs to run, followed up by another 2 syringes -- saline and heprin)
6p C
9p V (I want to sleep now, but I have to wait 1.5 hr for the pump to be done and do the other 2 syringes. Also, the second home-health nurse is here.)
-potty break for Ian somewhere around midnight-
2a C (yup, this is not a pleasant wake-up)
-somewhere here, in a haze, is another bathroom trip. I think.
5a V (wow, it's amazing what a dope I am at this hour, after a few hours of semi-sleep on a squishy couch. I manage to start the pump and set my alarm, fall asleep, get back up and disconnect, go back to bed, start to fall asleep, only to realize I forgot the 2 follow-up syringes. Back to sleep at 7.)
11a C (nurse is here! just to be sure I've got this. And I do ... although this is the easy one)
12p V (like a boss. Is it bedtime yet?)
7p C/V (they're both together now! yay! but we're not done fussing yet ...)
3a C/V (yup, that sucks - I'll either need to go back to bed for an hour or stay up till 430 ...)
10a C/V
5p C/V
12p C/V
8a C/V (the golden hour! now we can go back to the schedule we had at the hospital, 8 4 and 12. Much more manageable).
It's not that any of the things are difficult, or particularly stressful (although being apprehensive about being 5 hours late on a dosage was getting there) -- I've gotten "over" my extreme paranoia about screwing up the sterilization and antibiotic administration -- it's that all of these things are swirling around in my brain. They are all things to be considered and done, and that's outside the slow, arduous trips to the bathroom, the pill regimen, meals, kids, general house-type things .... and starting this week, the cadre of therapists who will be calling (phone calls! blech!) to arrange -- and then showing up to do -- speech, occupational and physical therapy.
Okay: maybe I'm whining. Just a little.
Yesterday: Laundry. Making the hospital bed that's in the living room. Potty chair and wheel chairs are ready to go. Bath chair arrives (thanks, friend!).
Mom meets me at the rehab center to get Ian. This round, I'm giving two types of antibiotics at home. One requires 4 syringes (2 saline, 1 heprin, 1 med, which needs to be kept cold and removed from the fridge 30 minutes prior). The other requires a very slow push, so it uses a giant syringe and a motorized pump. I receive a demonstration before leaving the hospital.
 |
| Freedom60 Pump |
At 1:30 p, the school calls: Ezra is having "difficult bathroom issues" and needs to be picked up. We wheel Ian and his walker to the car, and with some difficulty load him up. Then we head to the school and get Ezra, who is "uncomfortable" but well enough. We cram in and head home. The home health nurse calls to say she'll be at the house around 5p.
IV medicine is due at 4. It won't be delivered till 4:30p ... okay. There's wiggle room. We're supposed to wait for the nurse to arrive to do the first home dosage.
The meds show at 5p. Still okay. I unpack the refrigerated box and bag of boxes of bags and meds and supplies and organize them a bit. I realize: no magic pump.
Maybe the nurse brings it with her? Since I haven't been "checked off" on using it?
I should have known better, based on last time: meds are one folks, care is another.
Nurse shows at 6p (we're now at 2 hrs past due): no pump.
She calls, they're "sending it out," which means we'll have it by 9p. She sticks around for the meds I CAN do, and we do some math:
The antibiotics are on an 8-hour schedule. They are now staggered, 3 hours apart, and both have started later than the schedule. This means we need to fuss with the dosing times, using that aforementioned wiggle room to get them lined up together and properly spaced. It looks like this: (C and V being the two types; remember that "V" uses the pump, and therefore takes 1.5 hrs to run, followed up by another 2 syringes -- saline and heprin)
6p C
9p V (I want to sleep now, but I have to wait 1.5 hr for the pump to be done and do the other 2 syringes. Also, the second home-health nurse is here.)
-potty break for Ian somewhere around midnight-
2a C (yup, this is not a pleasant wake-up)
-somewhere here, in a haze, is another bathroom trip. I think.
5a V (wow, it's amazing what a dope I am at this hour, after a few hours of semi-sleep on a squishy couch. I manage to start the pump and set my alarm, fall asleep, get back up and disconnect, go back to bed, start to fall asleep, only to realize I forgot the 2 follow-up syringes. Back to sleep at 7.)
11a C (nurse is here! just to be sure I've got this. And I do ... although this is the easy one)
12p V (like a boss. Is it bedtime yet?)
7p C/V (they're both together now! yay! but we're not done fussing yet ...)
3a C/V (yup, that sucks - I'll either need to go back to bed for an hour or stay up till 430 ...)
10a C/V
5p C/V
12p C/V
8a C/V (the golden hour! now we can go back to the schedule we had at the hospital, 8 4 and 12. Much more manageable).
It's not that any of the things are difficult, or particularly stressful (although being apprehensive about being 5 hours late on a dosage was getting there) -- I've gotten "over" my extreme paranoia about screwing up the sterilization and antibiotic administration -- it's that all of these things are swirling around in my brain. They are all things to be considered and done, and that's outside the slow, arduous trips to the bathroom, the pill regimen, meals, kids, general house-type things .... and starting this week, the cadre of therapists who will be calling (phone calls! blech!) to arrange -- and then showing up to do -- speech, occupational and physical therapy.
Okay: maybe I'm whining. Just a little.
Monday, October 19, 2015
A Little Sugar: Sweet Times and Home Sweet Home
So, this happened:
On Saturday, after a full day's rest and a bit of administrative generosity, Ian got to visit with buddies from his Navy pilot days: Bluetails VAW-121 descended on a local restaurant to swap inappropriate stories and show their appreciation for "Rev." It was a MAGICAL night ... for Ian, 1. to be out of the hospital after two months straight, 2. to reconnect with brother-like-guys he hasn't seen in 10 years, 3. to exercise his brain with good memories and conversation. For me, it was like no time had passed ... it felt like a typical squadron function. My non-social self was completely at ease with the old crew, and it felt warm and fuzzy. No pity, just encouragement. It was like Normal Town for a few hours. (BTW, I had nothing to do with planning the event other than to get Ian dressed and to the restaurant. Thanks to all who coordinated this special night, and went out of their way to attend.)
And as if Saturday didn't give us enough of a much-needed high, today we got the news:
I'm taking a risk, putting it out there in print this soon -- as I've noted before, things change, we take steps backward, drama unfolds. But I feel pretty good about this impending jailbreak.
What this means: Ian will receive in-home therapy from several specialists, likely followed by out-patient rehab. He will sleep on the 1st floor until he is strong and confident on the stairs. He will, of course, be open to visitors, if they are cootie free and have checked with me.
I am the wizard. The gatekeeper. The troll. Dr. David Banner ("You won't like me when I'm angry"). Get your flu shot, keep your germies at home, and do not "stop by" or "pop in" unannounced (this goes for family and clergy and the President, if he is so inclined); remember, his bed will be feet from the door -- no chance of your arrival not waking him. A call, email, Facebook message or text will let me protect his rest, his family time, and my sanity.
Lots more hard work to do. New phase, new challenges. But there has been triumph.
On Saturday, after a full day's rest and a bit of administrative generosity, Ian got to visit with buddies from his Navy pilot days: Bluetails VAW-121 descended on a local restaurant to swap inappropriate stories and show their appreciation for "Rev." It was a MAGICAL night ... for Ian, 1. to be out of the hospital after two months straight, 2. to reconnect with brother-like-guys he hasn't seen in 10 years, 3. to exercise his brain with good memories and conversation. For me, it was like no time had passed ... it felt like a typical squadron function. My non-social self was completely at ease with the old crew, and it felt warm and fuzzy. No pity, just encouragement. It was like Normal Town for a few hours. (BTW, I had nothing to do with planning the event other than to get Ian dressed and to the restaurant. Thanks to all who coordinated this special night, and went out of their way to attend.)
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| You DON'T wanna know what was so funny. |
Ian comes home Friday.
I'm taking a risk, putting it out there in print this soon -- as I've noted before, things change, we take steps backward, drama unfolds. But I feel pretty good about this impending jailbreak.
What this means: Ian will receive in-home therapy from several specialists, likely followed by out-patient rehab. He will sleep on the 1st floor until he is strong and confident on the stairs. He will, of course, be open to visitors, if they are cootie free and have checked with me.
I am the wizard. The gatekeeper. The troll. Dr. David Banner ("You won't like me when I'm angry"). Get your flu shot, keep your germies at home, and do not "stop by" or "pop in" unannounced (this goes for family and clergy and the President, if he is so inclined); remember, his bed will be feet from the door -- no chance of your arrival not waking him. A call, email, Facebook message or text will let me protect his rest, his family time, and my sanity.
Lots more hard work to do. New phase, new challenges. But there has been triumph.
Thursday, October 8, 2015
Even Less Sugar: Rehabulous
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| weaving cones in a walker. like a boss. |
First week of rehab is in the can.
It's quite an adjustment go to from the buzz of the ICU floor, with much staff and sterile and beeping and always poised for the next specialist's visit to a chill, quiet, open hallway, no monitors attached. It might seem like a big relief, but it takes (me) a few days to breathe easy and not worry that he's not receiving enough medical attention.
He's close to home! Yay! That's a fantastic, fabulous thing. Except it does raise some questions and some guilt: how much time should I/do I need to spend at the hospital with him? He's working hard ... does he need/want a cheerleader in his therapy sessions? Shall I wait for him to be done and then come to see him? If I'm not here every day, does that mean I don't care? (obviously not, but that's where the guilt comes in). Does a "pop in" visit "count" or should I stay for a few hours? How often should I bring the kids in with me?
I was disappointed two days ago ... I watched him struggle with his tremor. He was pale. He said nonsensical things... he was too tired mentally to converse in a "meaningful" way. He was very cold, in a very warm room, and several coughs led to a raging headache.
It was depressing. I couldn't bring myself to come in yesterday.
I kept reminding myself: He did this before. He relearned to walk. At one point, he sat with drool hanging out of his mouth, unaware of it. This is not that. We'll get there ... Be patient.
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| rehab snuggles (it was PJ day at school) |
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| Audrey makes eye contact. So feelings. |
But then I'd think: Yes, but this time he's altered going into rehab. He's not 100% to start ... what is baseline now? Is "generally confused" going to be the way things are? Is he ever going to show interest or patience in the minutia of conversation? Have we transitioned from best friends to caregiver and patient?
What happens when he's released from rehab? That puts me back into nurse mode again. I am the one to determine "how he is" going forward. Pressure.
I spent most of a day arguing with myself, dealing with my own demons.
Today I steeled myself to get over it and spend time with my partner, my friend, my love.
I was rewarded with a More-Ian Ian.
Yesterday I felt defeated and rotten. Today, we can do all things.
It's different by the day, folks. This journey we're on ... it's a bumpy one.
Monday, September 28, 2015
Even Less Sugar: No News is No News
It's been a while since I've updated. I was waiting for a change in circumstance - his, mine, Audrey's, the weather.
Things have changed, I suppose ... the weather cooled off, and Audrey gets a ride to and from school until she can possibly navigate a bus trip again. My back went out a few days after I returned from the week-long hospital vigil, which effectively put me out of commission for almost two weeks (it's better now, although not back to "normal"). During that time they moved Ian to the step-down floor from the ICU.
I think that about covers it.
Things have changed, I suppose ... the weather cooled off, and Audrey gets a ride to and from school until she can possibly navigate a bus trip again. My back went out a few days after I returned from the week-long hospital vigil, which effectively put me out of commission for almost two weeks (it's better now, although not back to "normal"). During that time they moved Ian to the step-down floor from the ICU.
- He has a shunt placed, which is a permanent thing, and those scars are healing up.
- He got a new helmet (the one he had before was ridiculously small and there was a bit of an uprising on that front. Squared away now).
- His arm swelled; the PICC line stopped working, so they removed it and put one in his other arm.
- The carrot of "discharge to rehab" was dangled, followed immediately by some radical swings in white blood counts which stalled the move. They cannot account for the numbers, can't find a source of infection, and are loathe to send him off without either a diagnosis or an acceptable (but elusive) infection-free time period. He is now on week five of a mostly bed-ridden hospitalization.
- He has two clots: one in his arm, one in his lung.
- The staples were removed from his head.
- He has phantom stomach pains.
- He has recurring, nondescript, varying headaches.
- He receives antibiotics, steroids and blood thinners (along with another host of meds including stomach drugs to help the indigestion from the antibiotics? and sometimes insulin depending on his blood sugar count, which is affected by the steroids).
- He has a left-side tremor which seems to worsen after exertion, or when he feels cold (fever?), when he's trying to eat, or on days ending in Y.
- Oh, and he has a tumor in his head.
I think that about covers it.
Sunday, September 13, 2015
Even Less Sugar: When Audrey Finally Lets Loose
She wants things just to be normal. (God, do I know how she feels.)
She wants someone at school to talk to. (How I wish our school counselor wasn't split between two buildings. Would it be possible to make room in the budget for two??)
She describes living behind a glass wall that isn't sound-proof. Describes bricks being built up around her.
She feels like it's "pretending" to continue with things like karate and piano, and gets a sense of dread when she knows they're coming up.
She wishes she didn't believe in God because then it wouldn't be like He did this or wasn't fixing it.
She wants me to pay more attention to the little things, like when she talks about friends and grades and classes and such. I'm "always tired or stressed" and "compared to Dad all this stuff is insignificant."
She feels bad when people say they're praying for us. It reminds her that things are bad. It reminds her that they're not getting better.
Thursday, September 10, 2015
Even Less Sugar: The Wife Is Right
Went in this morning to a sickly Ian. He had eaten some of his breakfast, but as you may have noted, he normally has quite an appetite. Not so for the last 48 hours.
I asked him about something, or he tried to tell me something, and there it was again. The word-finding problem. His EYES hurt. That was a new one. I went off to find Barry, the day nurse.
Barry has been a nurse for 26 years. He is fast, efficient, knowledgeable, and explains everything thoroughly. If he has time, he’s borderline “chatty,” but always in a sense of, “let’s talk about this thing for a minute or two because I’m friendly and I care but I also need to go check on my other patients.”
“Barry, he’s not right. I know he knows what month it is and what hospital he’s in, but he’s not able to find words, he’s not making sense, his tremor is quite noticeable just lying there, and he’s cold in a 400 degree room. There’s something WRONG.”
Barry went over all his numbers and tests with me. The CT scan I pushed for last night showed no significant change from the last scan days before. There had been an elevated white blood cell count, and they were still culturing his blood and CSF for infection.
Neuro guy came up to remove his lumbar drain (which had, in the prior 24 hours, slowed to a stop and was therefore both ineffective and a potential entry for an infection). Barry relayed to him my concerns, re: last night and today’s altered mental status.
An hour or so later, Ian’s surgeon came in, felt the back of his head, took one look at his sad self in the bed and determined: we need to do a brain drain; the CSF is building up. He said if it weren’t for the tremors and therefore anesthesia needed, it could have been done bedside. It’s a “procedure,” serving the purpose of a shunt, but where the latter is permanent, this drain will be temporary. All of this is complex, but the short version is: with his fever fluctuation still not definitively diagnosed, we need to be sure he is free from infection before another procedure to implant a foreign body.
After the surgery, the surgeon told us that upon opening him up (I’ve lost track of the head holes at this point), he found a significant build-up and flow of CSF. It’s gotta go somewhere, and it’s just insisting on trying to come out of his head, which is effectively (we hope! for good this time!) water tight.
A shunt is still in the plans. The blood thinners will be resumed half an hour from this writing, playing with the dosage so he has the appropriate amount in his blood stream to prevent new clots and tackle the current ones. If you look here, you will see the first potential complication is risk of bleeding, especially in patients on coagulopathy: ie: BLOOD THINNING. Also on that list of complications: migration (which is what happened to the last drain that was installed during most recent surgery to repair the hole/move the scalp), infection, which is always our enemy, and the most complicated and terrifying: obstruction (see all the things we’re now expecting of the ICU nurses in terms of care and prevention?)
The doctor told us something they learned in medical school: “Always believe the mom. If she says there’s an XYZ, there’s an XYZ.” It’s haughty of me, and not even remotely the important part of this story (which is that Ian received treatment for a bad thing doing bad things), but
I asked him about something, or he tried to tell me something, and there it was again. The word-finding problem. His EYES hurt. That was a new one. I went off to find Barry, the day nurse.
Barry has been a nurse for 26 years. He is fast, efficient, knowledgeable, and explains everything thoroughly. If he has time, he’s borderline “chatty,” but always in a sense of, “let’s talk about this thing for a minute or two because I’m friendly and I care but I also need to go check on my other patients.”
“Barry, he’s not right. I know he knows what month it is and what hospital he’s in, but he’s not able to find words, he’s not making sense, his tremor is quite noticeable just lying there, and he’s cold in a 400 degree room. There’s something WRONG.”
Barry went over all his numbers and tests with me. The CT scan I pushed for last night showed no significant change from the last scan days before. There had been an elevated white blood cell count, and they were still culturing his blood and CSF for infection.
Neuro guy came up to remove his lumbar drain (which had, in the prior 24 hours, slowed to a stop and was therefore both ineffective and a potential entry for an infection). Barry relayed to him my concerns, re: last night and today’s altered mental status.
An hour or so later, Ian’s surgeon came in, felt the back of his head, took one look at his sad self in the bed and determined: we need to do a brain drain; the CSF is building up. He said if it weren’t for the tremors and therefore anesthesia needed, it could have been done bedside. It’s a “procedure,” serving the purpose of a shunt, but where the latter is permanent, this drain will be temporary. All of this is complex, but the short version is: with his fever fluctuation still not definitively diagnosed, we need to be sure he is free from infection before another procedure to implant a foreign body.
After the surgery, the surgeon told us that upon opening him up (I’ve lost track of the head holes at this point), he found a significant build-up and flow of CSF. It’s gotta go somewhere, and it’s just insisting on trying to come out of his head, which is effectively (we hope! for good this time!) water tight.
A shunt is still in the plans. The blood thinners will be resumed half an hour from this writing, playing with the dosage so he has the appropriate amount in his blood stream to prevent new clots and tackle the current ones. If you look here, you will see the first potential complication is risk of bleeding, especially in patients on coagulopathy: ie: BLOOD THINNING. Also on that list of complications: migration (which is what happened to the last drain that was installed during most recent surgery to repair the hole/move the scalp), infection, which is always our enemy, and the most complicated and terrifying: obstruction (see all the things we’re now expecting of the ICU nurses in terms of care and prevention?)
The doctor told us something they learned in medical school: “Always believe the mom. If she says there’s an XYZ, there’s an XYZ.” It’s haughty of me, and not even remotely the important part of this story (which is that Ian received treatment for a bad thing doing bad things), but
I. Was. Right.
Even Less Sugar: How BIG of a Problem IS This, Really?
When your husband's heart rate spikes when they try to get him out of bed, (and you're not even there to see it because you forced yourself to "get out" and took the shuttle to Target for an hour) then later his cognitive function seems "off" and then he clearly has a fever but nothing is reading as such, his tremor is crazy bad, his nurse (before she leaves for the next shift) mentions his "CSF fluid is a darker color" (she at least also tells you she's informed the doctor), and he says he has a headache, when he hasn't had one for a day or so, when they're testing his blood for Heprin content but not for infection, when he then SHOWS a fever ...
Is this a brain bleed?
Is this an infection?
Is this a BRAIN infection?
Is this the tumor doing something?
Is this swelling post-op?
Is this a pool of CSF up there making trouble? Is it air somehow getting in again?
Does this "just sometimes happen?"
Does this "sometimes cause this other thing?"
All of that, coupled with feeling like no one was listening to what I was saying, married with, "am I way over-reacting here, if no one else seems concerned?" on top of "they're all in surgery and can't chat with us about this," and "we still haven't determined what we're doing about that PICC line (replace or keep?) ... and "yes, he can tell you his name and this hospital, but he says the bathroom is way down the hall, and says it in broken speech, when he's never actually USED this bathroom and if he had, he'd know it's about 2 feet away ...
I'm so tired.
Ian is sleeping comfortably. His fever went away, his heart rate is acceptable and steady. My eyes sting from a two-hour terror cry. I'm going to bed, while my Dad sits up with Ian for a bit longer, watching him sleep. Tomorrow is a new day, of course ... but as we know, it can always be worse.
Pray for us. I have no idea what today was about, nor do I know if we'll ever know, NOR do I know it won't happen again, or even not to EXPECT it, for that matter. Semper Gumby.
Also please pray for "A," a man probably younger than Ian with similar health history who seems to have taken a dramatic downturn tonight.
There are others on my heart tonight. You know who you are. A hard, sad night.
At least there was rain.
Is this a brain bleed?
Is this an infection?
Is this a BRAIN infection?
Is this the tumor doing something?
Is this swelling post-op?
Is this a pool of CSF up there making trouble? Is it air somehow getting in again?
Does this "just sometimes happen?"
Does this "sometimes cause this other thing?"
All of that, coupled with feeling like no one was listening to what I was saying, married with, "am I way over-reacting here, if no one else seems concerned?" on top of "they're all in surgery and can't chat with us about this," and "we still haven't determined what we're doing about that PICC line (replace or keep?) ... and "yes, he can tell you his name and this hospital, but he says the bathroom is way down the hall, and says it in broken speech, when he's never actually USED this bathroom and if he had, he'd know it's about 2 feet away ...
I'm so tired.
Ian is sleeping comfortably. His fever went away, his heart rate is acceptable and steady. My eyes sting from a two-hour terror cry. I'm going to bed, while my Dad sits up with Ian for a bit longer, watching him sleep. Tomorrow is a new day, of course ... but as we know, it can always be worse.
Pray for us. I have no idea what today was about, nor do I know if we'll ever know, NOR do I know it won't happen again, or even not to EXPECT it, for that matter. Semper Gumby.
Also please pray for "A," a man probably younger than Ian with similar health history who seems to have taken a dramatic downturn tonight.
There are others on my heart tonight. You know who you are. A hard, sad night.
At least there was rain.
Tuesday, September 8, 2015
(To)Day in the Life
I wake frequently at hotel-y place. 3am, 5am, etc. Humid. Air conditioner is loud and ineffective. Weird dreams. Also, my Dad, who stays with me, MIGHT talk in his sleep. And shout, occasionally.
7:30: up for good. Walk down the street to Starbucks. Go full throttle with a venti dark and a pumpkin scone.
7:45: into the ICU hospital room. Plunk down my crap in a little nook there. Plug in computer/phone to charge.
8:00-ish: talk to neuro doctor who comes in to check on things. He says he's fine with how things are looking and it's likely Ian will get his filter and be moved to a step-down floor "soon." (by now, we know that soon means at least this WEEK. But not necessarily today, or even tomorrow.) But that's "vascular's department and they will make that call."
8:30a-1p: Listen to nurse banter (fun!). Text folks. Answer emails. Play Candy Crush. Continuously scan Facebook. Color pages in my grown-up coloring book. Give Ian a "sponge bath." Have lunch in the hospital cafeteria. Wander around hospital gift shop, hoping something magically appears that wasn't there the last 15 times. (nope)
1-something: Ian has several scans of legs and arm and heart to be sure there are no other clots or heart issues. We are assured all is clear.
3:00: still waiting for one set of people to talk to another set of people to okay the filter and/or the move.
Ian: mostly sleeps. Does not eat, as he's "going to have a procedure soon" and cannot have food in him at that time ... so hasn't eaten since dinner last night. Nurses come in and out to check his drain(s), ask him if he's ok, give him meds.
4:10: Audrey calls to sob about not wanting to go to karate and being depressed and feeling sick and "what if I freak out at karate? and we're doing a project at school can I glue that book to it? and I just really don't like karate because I get hot and sweaty and when I know we're going I get all anxious about it at school (Depression is something real but not scary and something that would be understandable, but in your case, all of this sucks and you're sad about it, and that's normal. And you're going to karate tonight.) and Ezra said this house is boring and I told him mom was going to make him scrub toilets and he said, 'She's not even here.'"
He's right. I'm not.
Texts: How are you? How is Ian? Can I talk to him on the phone? Do you need anything? Is it okay to visit tonight?
4:45: still no food, still no procedure. Ian throws an (bed-ridden) hissy fit.
Rachel proceeds to have her first? meltdown this round, in the privacy of a depressing waiting room bathroom. The man is in mortal danger several times this summer and he's in a snit about a freaking sandwich?! I'm sitting in the ICU ALL DAY watching HIM watch absolutely NOTHING happen for 24 hours, while attempting to parent my children by phone. Yeah, I'm a little irritated, too, but what is there to do about it? Shall I shovel a cookie into him and tell the people they can wait on that procedure till tomorrow? (which, oh by the way, is either essential and life saving or it's not ... I can't get a clear picture on how interested they are in even DOING it, let alone when it might happen).
5:20: Snazzy suit doctor with gold (no kidding) stethoscope makes his daily check-in to make sure we have no infectious diseases. We don't.
5:30 Nurse comes in and explains all the phone calls she's made today trying to get this all taken care of (I've heard her do so. She's been trying. And she's very nice, and competent).
At this point we think it's unlikely they'd do the filter today anyway. So we've "fasted" a whole day to no end. Food still hasn't been approved, but we (and by "we," I mean the nursing staff and me and Ian) are likely to proceed with abandon at victuals by 6.
I'll sit here a few more hours, his dad will arrive, my dad will arrive, we'll all sit and watch him sleep some more, then head to our respective spots and do it all again tomorrow.
Except, I hope, for the meltdowns.
7:30: up for good. Walk down the street to Starbucks. Go full throttle with a venti dark and a pumpkin scone.
7:45: into the ICU hospital room. Plunk down my crap in a little nook there. Plug in computer/phone to charge.
8:00-ish: talk to neuro doctor who comes in to check on things. He says he's fine with how things are looking and it's likely Ian will get his filter and be moved to a step-down floor "soon." (by now, we know that soon means at least this WEEK. But not necessarily today, or even tomorrow.) But that's "vascular's department and they will make that call."
8:30a-1p: Listen to nurse banter (fun!). Text folks. Answer emails. Play Candy Crush. Continuously scan Facebook. Color pages in my grown-up coloring book. Give Ian a "sponge bath." Have lunch in the hospital cafeteria. Wander around hospital gift shop, hoping something magically appears that wasn't there the last 15 times. (nope)
1-something: Ian has several scans of legs and arm and heart to be sure there are no other clots or heart issues. We are assured all is clear.
3:00: still waiting for one set of people to talk to another set of people to okay the filter and/or the move.
Ian: mostly sleeps. Does not eat, as he's "going to have a procedure soon" and cannot have food in him at that time ... so hasn't eaten since dinner last night. Nurses come in and out to check his drain(s), ask him if he's ok, give him meds.
4:10: Audrey calls to sob about not wanting to go to karate and being depressed and feeling sick and "what if I freak out at karate? and we're doing a project at school can I glue that book to it? and I just really don't like karate because I get hot and sweaty and when I know we're going I get all anxious about it at school (Depression is something real but not scary and something that would be understandable, but in your case, all of this sucks and you're sad about it, and that's normal. And you're going to karate tonight.) and Ezra said this house is boring and I told him mom was going to make him scrub toilets and he said, 'She's not even here.'"
He's right. I'm not.
Texts: How are you? How is Ian? Can I talk to him on the phone? Do you need anything? Is it okay to visit tonight?
4:45: still no food, still no procedure. Ian throws an (bed-ridden) hissy fit.
Rachel proceeds to have her first? meltdown this round, in the privacy of a depressing waiting room bathroom. The man is in mortal danger several times this summer and he's in a snit about a freaking sandwich?! I'm sitting in the ICU ALL DAY watching HIM watch absolutely NOTHING happen for 24 hours, while attempting to parent my children by phone. Yeah, I'm a little irritated, too, but what is there to do about it? Shall I shovel a cookie into him and tell the people they can wait on that procedure till tomorrow? (which, oh by the way, is either essential and life saving or it's not ... I can't get a clear picture on how interested they are in even DOING it, let alone when it might happen).
5:20: Snazzy suit doctor with gold (no kidding) stethoscope makes his daily check-in to make sure we have no infectious diseases. We don't.
5:30 Nurse comes in and explains all the phone calls she's made today trying to get this all taken care of (I've heard her do so. She's been trying. And she's very nice, and competent).
At this point we think it's unlikely they'd do the filter today anyway. So we've "fasted" a whole day to no end. Food still hasn't been approved, but we (and by "we," I mean the nursing staff and me and Ian) are likely to proceed with abandon at victuals by 6.
I'll sit here a few more hours, his dad will arrive, my dad will arrive, we'll all sit and watch him sleep some more, then head to our respective spots and do it all again tomorrow.
Except, I hope, for the meltdowns.
Monday, September 7, 2015
Even Less Sugar: Pummeled by Complications
I dread trotting over here to the blog. Because sometimes so much as happened since my last post, and I don't want to relive it to get it into print here ... but I also don't like to leave gaps in the story. So here's a brief summary of our current state of affairs:
The surgery to realign his scalp to cover the hole went well. They removed the bone flap, but the surgeon says that barring his participation extreme sports and ultimate fighting, it might not be necessary for him to wear a helmet out and about.
He had, post op, two drains in place: one to drain CSF and one to drain blood from the surgical site. Unfortunately the former drain did not prove effective, and so they re-installed a lumbar drain, which seems to be functioning as they expect. This is a SLOWER drain than before, when the air was getting sucked INto the head and into the brain.
Unfortunately all this lazy lying around stuff he's been doing has led to a blood clot in his lung. According to last night's nurse, the clot is REALLY big. Her eyes got big. Serious stuff.
From what I can piece together and keep learning from nurses and doctors as they pass through, here's the current course of treatment:
1. blood clots cannot go to the heart; if they do, heart attack, stroke? and ... delicately: Ian would not likely survive such an event
2. blood thinners are an immediate course of action (and were started immediately), however they hold their own risks, vis a vis bleeding following a surgery. Specifically, they'll need to monitor closely for a brain bleed(s) (which they are doing via regular CT scans).
3. thinners allow the body's blood to slowly break down the clot. And by slowly, we're talking MONTHS. In the meantime, it seriously, no kidding can't break apart/move to the heart. So now ...
4. it's likely he will have, perhaps today, more likely tomorrow, installed a filter. This is a procedure, not an operation, and is relatively standard in treating this situation. Again, however, there are risks, and Ian's condition accentuates those risks.
Ian: is relatively cognitively stable. He is mostly horizontal. He's had nothing to eat or drink since lunch yesterday, pending this possible procedure, so he's crabby about that.
Rachel: is pressing on. No vertigo today, thank God. I'm bunked at the Family House Shadyside across the street (for patients getting treatment from out of town, families of patients, etc - an amazing thing, really), which, albeit a pricey week-long solution is preferable to waiting room non-sleep. I can be in his room within five minutes and have access to a shower and bed.
Audrey & Ezra: are doing the Gramma Cha-Cha. I don't know "how" they are, REALLY, but for the moment, they are doing life the only way they can ... one day at a time.
Thanks to everyone for your help and continued prayers.
Below, a picture of the rather Frankenstein's monster-esque head scar. You have been warned.
The surgery to realign his scalp to cover the hole went well. They removed the bone flap, but the surgeon says that barring his participation extreme sports and ultimate fighting, it might not be necessary for him to wear a helmet out and about.
He had, post op, two drains in place: one to drain CSF and one to drain blood from the surgical site. Unfortunately the former drain did not prove effective, and so they re-installed a lumbar drain, which seems to be functioning as they expect. This is a SLOWER drain than before, when the air was getting sucked INto the head and into the brain.
Unfortunately all this lazy lying around stuff he's been doing has led to a blood clot in his lung. According to last night's nurse, the clot is REALLY big. Her eyes got big. Serious stuff.
From what I can piece together and keep learning from nurses and doctors as they pass through, here's the current course of treatment:
1. blood clots cannot go to the heart; if they do, heart attack, stroke? and ... delicately: Ian would not likely survive such an event
2. blood thinners are an immediate course of action (and were started immediately), however they hold their own risks, vis a vis bleeding following a surgery. Specifically, they'll need to monitor closely for a brain bleed(s) (which they are doing via regular CT scans).
3. thinners allow the body's blood to slowly break down the clot. And by slowly, we're talking MONTHS. In the meantime, it seriously, no kidding can't break apart/move to the heart. So now ...
4. it's likely he will have, perhaps today, more likely tomorrow, installed a filter. This is a procedure, not an operation, and is relatively standard in treating this situation. Again, however, there are risks, and Ian's condition accentuates those risks.
Ian: is relatively cognitively stable. He is mostly horizontal. He's had nothing to eat or drink since lunch yesterday, pending this possible procedure, so he's crabby about that.
Rachel: is pressing on. No vertigo today, thank God. I'm bunked at the Family House Shadyside across the street (for patients getting treatment from out of town, families of patients, etc - an amazing thing, really), which, albeit a pricey week-long solution is preferable to waiting room non-sleep. I can be in his room within five minutes and have access to a shower and bed.
Audrey & Ezra: are doing the Gramma Cha-Cha. I don't know "how" they are, REALLY, but for the moment, they are doing life the only way they can ... one day at a time.
Thanks to everyone for your help and continued prayers.
Below, a picture of the rather Frankenstein's monster-esque head scar. You have been warned.
Wednesday, September 2, 2015
Even Less Sugar: You can't keep sewing up a torn tarp.
Guys.
Thursday morning, Ian will have yet another surgery. This (plastic) surgery procedure is to cover the incision site; currently the opening where the three lines meet on his head has been allowing spinal fluid to leak out and air to leak in, has not healed completely/properly/quickly enough, and is a potential source of infection. WE CAN'T HAVE THAT AGAIN.
So this is the LESS invasive option:
They will make a very large, arced incision along the scalp. They will then PICK UP ALL THAT SKIN AND SHIFT IT COUNTER-CLOCKWISE AND PUT IT BACK DOWN. (Think of a secret decoder ring ... turning the top part on its axis). They will then have an open area (the shorted side) where they will graft skin from his THIGH. He will then have donor skin grafted to THAT spot. (I tried to find you some kind of picture or diagram to explain this, but I nearly hurled in the hunting so I stopped. I don't recommend Googling scalp surgery of any kind. Blerg.) * Skin from his thigh will likely do well in the side opening left by the "scalp shift;" it should attach to that growing stuff and do its thing.
The reason to do things THIS way is to fully cover the incision site with a sheet of skin already connected to a blood source: ie, the scalp is alive (with the sound of music) and will therefore re-attach and grow normally. (A skin graft over top of the whole site is not an option.) The good news is, the plastic surgeon has done many of these operations before, with good success. They happen often, actually.
The bad news is that the tissue beneath the wound has been irradiated; it is dead and dying. That's a "good" thing for killing cancer, but a bad thing for wound healing. And the skin itself is delicate and damaged from the now THREE repeated incisions (2006 resection, June's biopsy and July's clean-out).
As they open him up, they will be able to see the extent of the CSF leak. It's possible they will take muscle from the fascia of his cheek and use that to sew closed where the leak is happening (take a minute to digest the complexity of this stuff. Holy crap).
It's also possible they will need to remove the bone flap they didn't have to remove during the last operation; neurosurgery will make that determination after opening things up. If that occurs, it will make the plastic surgeon's work smoother (literally), but it will also mean Ian will need to wear a helmet for a while to protect the then exposed brain. **
After the surgery we'll know more, in terms of what of the above options were necessary, and what to look for in healing and recovery. There will likely be one or more drains in his head/face, and possibly a shunt. You can probably Google that without losing your lunch.
He was much better Tuesday than he was Saturday. His tremor was nearly gone at lunch time, but it was back by dinner. He spilled food all over himself and didn't realize it. He didn't initiate conversation, but he did understand and respond. The only thing he said on his own initiative Tuesday was, "I'm sorry I can't do stuff." But his cognition is better. As per his last CT scan (he gets one every morning), he has less air in the brain. But it's still there ... and I'm hoping it has a lot to do with the tremor and "off" nature. He's not walking well, either -- a heavy lean and very short shuffles.
He doesn't remember the bowling ball cake. He doesn't remember that the kids were in to see him. He doesn't remember the staff on the floor coming in to sing Happy Birthday. Who knows how aware he really is of this coming surgery, but I'm sure if he were fully aware he'd say, "Sure, go for it. It's just skin," or something equally snarky.
I miss my Ian. His body is there, but there's this terrible not-there-ness to him that is so hard to take. It was like this in 2011, I keep reminding myself; he relearned to walk and talk and eat. He can overcome this air in the brain thing and move forward.
Tomorrow: forward motion.
* If this surgery does not "take," there is a more difficult and complex surgery as Plan B. Let's not get to Plan B, okay?
** Basically till he's healed back up, and then an option is to go BACK in and replace the bone piece with a chunk of something synthetic. ANOTHER head surgery with the potential for infection and CSF and air? but also ... no helmet. Anyway, we're not there yet, so let's not worry about Plan A.2, okay?
Sunday, August 30, 2015
Even Less Sugar: Happy Flipping Birthday
I try to be positive.
Sometimes it's really hard.
Yesterday was one of those times.
I haven't been to the hospital in several days; I needed to get the house in order and the kids started at school. I needed to act as CEO of Maize, Inc. and create some routine and stability. And I did so.
But Audrey's stomach problems got worse, causing a panic attack at the bus stop and subsequent melt-down at the school when it was time to go to class... for a kid who LOVES school, seeing her sobbing in the office, begging me to take her home, the watching her wipe tears from her eyes and hugging her backpack as the principal gently led her to her classroom ... ripped my heart out.
She's my stuffer. That went to her stomach. Not a surprise. She's been in self-protection mode; she avoids Ian at home and really doesn't want to hear about him in his absence. She doesn't ask.
Ezra still has his "issues" that make school challenging for him; he's antsy, tappy, hummy, clicky, sniffy, bored and a bit passive-aggressive. I got a teacher call on the second day of school.
He commented yesterday to all of us in the hospital room: "I'd rather you not die at the hospital. At home at least."
So it was a hard thing, visiting Ian. But it was his birthday. And it'd been a few weeks since the kids had seen him at all.
I arrived with trepidation. Audrey had already been combating anxiety on the trip. Now we were surrounded by the unfamiliar and scary and cold. This is a world that has become common to me: not so, for my kids. Look at her: she's terrified. She can't pretend this isn't happening. She can't run away and she can't insulate.
We entered the room. Ian was lying mostly prone, awake, but listless. His face did not light up at the sight of his wife or kids. He didn't speak first. His face was puffy. His skin was pale. His head wound is healing! But his speech was very slow. He's clearly tired... But this is a different tired. I've been thinking about how to describe it for two days, and all I can think is:
The demeanor of an elderly person you might visit in a nursing home, who may or may not recognize you or care that you're there to visit. Distant. Depressed. Vacant. Confused, but not even aware of the confusion.
I'm not saying he IS any of these things. It's just how he appears to me. He's been in the hospital more than a week, and I think I'd fooled myself into thinking that would mean steady forward progress. In fact, he's most certainly "worse" than he was when we arrived with his leaking head.
The staff came in and sang happy birthday. We presented the cake we brought in. He ate cake dutifully, persevering through a significant and frustrating tremor: his one good hand shakes to a startling degree.
We stayed a few awkward and uncomfortable hours. Audrey had to leave the room as Ezra said pointedly: "What's going on with the tumor? Wow, he's really shaking now! Why does he have to lie flat? What does the tube do? Is he going to die here?" When she returned she did a typical "Rachel thing": curled up in a ball to sleep. She never made eye contact with him. She just can't.
I get that.
Happy Birthday, Ian. Can we vow to not have next year's celebration in a hospital?
I get that.
Happy Birthday, Ian. Can we vow to not have next year's celebration in a hospital?
Sunday, August 23, 2015
Even Less Sugar: Hon, I Think My Head Is Leaking 2.0: It goes to ELEVEN
I keep reminding myself that they didn't have us go directly to the ER when the leak started. So that must mean we should all remain calm, right?
RIGHT???
Sigh.
Even Less Sugar: Hon, I Think My Brain Is Leaking: 1.0
It's a catchy song on a Chumbawumba album: Drip Drip Drip
It's verse in Proverbs that made us giggle when we met at New Wilmington Missionary Conference in 1994. Proverbs 19:13b: A nagging wife is like water going drip-drip-drip. (GNT)
It is NOT, however, something you want to come from your husband's HEAD.
At home. At 9pm.
Sure enough, there was a little "sweat" spot on his pillow as he sat up from resting.
"Can you look at my head? It feels wet." A wave of nausea washes over me as I recall our last episode.
The incision site is damp, the skin discolored, right at the joint. Right over the missing bone piece, where it split last time. I don gloves and dab the area with gauze.
Clear. Doesn't look open, or infected, just wet.
Is this how the infection started last time, but we didn't notice it? What if this is fluid under the scalp that is going to erupt? What if this is the tumor pushing up on the brain and shoving liquid out? What if this is "normal" for head wounds? What the heck?!
- Call the home health nurse line.
"My husband's head is leaking from the incision site. He does not have a fever, he is alert and has no other symptoms. No headache, The liquid is clear and odorless."
"We can get a nurse to you tomorrow morning. In the meantime, call the surgeon and see what they have to say."
"When can the nurse be here?"
"They usually make their calls around 8 to let you know when they're coming."
- Call surgeon's answering service, wait for a call back. Replenish "Oh-Sh*% Bag"
ring ring ... "How much is it leaking?" (How the hell do I quantify an amount of liquid on a pillow? The speed of liquid flow? I AM NOT A MEDICAL PROFESSIONAL.)
"Uh, I don't know ... it made a baseball-sized wet spot on the pillow." [typical questions to assess whether infection is present]
"Well, I would say if it soaks three gauze pads over night, you should get him to us right away. It could be spinal fluid or another infection. Or any fever or chills or neurological changes. If not we'll see him at his appointment Monday."
I'm not kidding. That's the way that phone call ended.
- Tape down a square of gauze. At Ian's demand, take a sleep aid and go to bed.
- Wake at 6:30a, when a neighbor decides to do some motorized lawn care. I reach over and touch the gauze. Soaked. He gets up to use the bathroom. I touch his pillow. Cold. Soaked. I remove the bandage. The site looks "normal" and dry.
"I was just wondering when someone can come and look at my husband's head."
"Did you call the doctor last night? And what did he say? We can put him on the schedule for tomorrow ..."
"I WAS UNDER THE IMPRESSION SOMEONE WAS GOING TO COME OUT THIS MORNING."
"No, m'am, if the doctor told you to keep an eye on it and he has no other symptoms, you can do that and we can send someone out tomorrow."
Was I supposed to call them back last night, after I talked to the doctor? Did they REALLY not think I wanted a call in the morning from a nurse who could come and evaluate him? How could that NOT have been conveyed?
So now here we are, the four of us, sitting in the living room, wondering what to do. Ian's stomach is growling. We've all looked at the incision site, which is not separated but slightly damp. Do I cover it to prevent infection? Does covering it harbor bacteria? What if the gauze sticks to the skin? I should protect it if he's going to leave the house. Should he leave the house?
- I put out a txt to all my nurse friends for advice. I take a picture of the incision.
He stands up to put on his shoes, and the faucet returns; the drips are running down his bald head onto his ear. ["Give me something to take with me to catch the drips," he says.] We all take another look. Friend calls surgeon friend of his. We're now leaning heavily toward the "Cerebral Spinal Fluid" diagnosis, which albeit not life-threatening in itself does not bode well for a brain surgery patient with recent infection and an unhealed head wound.
Off to the (local) ER.
They swab to culture the liquid, they do a CT scan. They call the "big" hospital and are instructed to send him there.
We wait. And wait. It's now close to 4p, when he should receive his next antibiotic injection. I inform the nurse. She doesn't have a record of the medication in his chart, so she needs to know what it is. I can remember the name, but not the dosage. I have her call the medicine delivery service, which is affiliated with the home health care company.
THEY REFUSE TO TELL US THE DOSAGE.
I have no car at the hospital, or I'd have driven down and gotten the stuff myself. I'd have a friend do that, but we have to be all sterile and careful with syringes and whatnot and I don't want to put that responsibility on someone else ... it's stressful enough for me to do it, hoping I didn't contaminate something unwittingly. So I do the only thing I can think of: I have a friend go take a picture of the bag of syringes in the fridge, with the dosage info. I show that to the nurse, meds are ordered and given. Done.
Only two hours later and we're off to the hospital in town. (Yup, we spent 10 hours at the local ER. It would have done us no good to travel to the "big" hospital on our own, as our wait was for a bed there. We would have just waited THERE for 10 hours, with the added bonus possibility of something going horribly wrong on our commute to the hospital, with I-AM-STILL-NOT-A-DOCTOR-Rachel at the wheel.)
Even at the hospital, nothing is to be done until the morning. But at least now we've confirmed that the leak is, indeed, CSF, and Saturday they will put in a drain elsewhere to divert the flow.
*My bathroom faucet is leaking. It's annoying. But I'll take an leaking bathtub fixture to a leaking brain any day.
Thursday, August 20, 2015
Even Less Sugar: Quietly Waiting
Things are quiet around here.
The kids are at Camp Kesem, and, by the pictures, seem to be having a marvelous time. They SO needed this, after the lousy summer we've had.
Ian is on week two of antibiotic treatments. (4 syringes, 3 times a day, for 6 weeks: This is mostly via Nurse Rachel, although Nurse Craig has blessed us by easing my workload. Thanks, Craig!) The steroids, which we're tapering, cause a great deal of heartburn and re-flux discomfort. Other than that, he's tired and tires easily. We try to get in some short walks, and he goes on food-based outings from time to time ... but we have to limit his activity to one event per day, as he spends a while napping to recuperate.
Rachel is depressed. Not the "of course you're down in the dumps, all this stuff is going on and you're run down and worried" "woe is me" kind of depressed....
This is "I've done this before where I go into crisis mode and kick hospital butt, then I go into the daily maintenance reality, and all of the feels come to get me at once, resulting in not wanting to get out of bed." This is clinical depression, back from the shadows to say, "Hello."
I was expecting this, so although it's disappointing and annoying, it's not catching me off guard. I'm working on my daily care plan ... basically I have to force myself to do things. But only a few things, and reward myself for doing them. And nap -- just not to the exclusion of all else. I've been here before; when the dust settles, and the long haul begins, there is no fight/flight energy. There is a vacuum (dig: I'm not using the non-metaphorical vacuum because of the metaphorical one. Ha.).
Yes, I know this is to be expected.
No, I don't need to "just get out of the house."
Yes, I am seeing a therapist.
No, I am not suicidal.
Yes, I am on medication.
No, I am not interested in oils or supplements.
Yes, I know I need to:
- connect with others
- exercise
- eat right
- get plenty of sleep
- pursue hobbies
- pursue relaxation
We're waiting
for the kids to come home
for school to start
for eight hours between antibiotic doses
for the antibiotic cycle to be over
to find out if we've beat the infection
for doctor appointments
for the wound to close tightly
for the chemo treatments to start again
for the next MRI to tell us what's going on in that brain
for a miracle
Tuesday, August 11, 2015
Even Less Sugar: Homecoming Hesitations
Ian is coming home tomorrow!!
Yippee.
Ok, don't take that the wrong way. I miss him, I miss having him at home and not in an hospital bed an hour away. Of course it's better for the patient to be at home, in familiar surroundings, surrounded by family and hopefully fewer sick people!
And yet, there is something very ominous about my return to the role of caregiver.
When he's in the hospital, he's not on my watch. He's being carefully monitored and scanned and medicated.
When he's home ... it's all me.
We start with the mid-night or super-early morning bathroom trip:
'Is he okay?' 'Is he staggering more than normal?'
"Are you okay, hon?"
"Mmmhmm."
"Okay."
Sometimes I fall back to sleep, sometimes I just try desperately to shun reality by putzing with my phone to fill the thought-wrought hours of the early morning. Then the sun comes up and the day begins in earnest.
Is he okay? Is that new? Should I help him with that? When did he eat last? What meds did he just take? Is he staggering? slurring? feverish? nauseous? dehydrated? Can he get his own breakfast this morning or do I need to make it for him? Can I trust him on the stairs? How's the incision site?
All this before I'm vertical.
It's stressful.
When you give birth, you go from doctors and nurses on duty, to guided care to, "Off you go with your newborn! Godspeed!" POW: go do this parenting thing on your own.
This is kinda like that.
Sure, I've managed to keep my kids alive ... but last week Ian had a brain infection.
Apples and Orangutans.
Saturday, August 8, 2015
Even Less Sugar: Brainwashed
We have experienced a significant setback.
On Thursday we headed into the ER; Ian had two episodes of loss of balance (although his balance has been generally altered since 2011, and even a bit more since the June biopsy, this was a new type of balance issue, and on his left instead of right side).
CT scan/MRI revealed a big problem: A LOT of infectious goo, IN the brain.
When Ian had his biopsy in June, it was to determine the genetic make-up of the growing tumor. Advances in medicine -- even since his first tumor was removed in 2006 -- have allowed for more pin-point treatment of certain genetic mutations in cells. The biopsy was to reveal if this was an option for us (result: it's not).
Following the biopsy we began chemo and radiation. A month into treatment, a follow-up scan showed significant swelling, and possible tumor GROWTH, or at least no reduction. The doctors then prescribed Avastin to combat the swelling - it's an IV chemotherapy treatment.
Unfortunately one of the side effects of Avastin is wound-healing inhibition. It was a risk the doctors felt we had to take, given his presenting symptoms and aggressive nature of the tumor. Most of the incision site was healed and sealed. There was just this one spot ...
Remember that your skin is your largest organ, and that bacteria hangs out there on a perfectly healthy person ... you're pretty much a bacteria farm. Washing not withstanding, bacteria lives.
In our case, bacteria from the skin made a beeline into the brain. It pretty much had a straight shot, following the channel of the biopsy incision right on in.
When we arrived at the ER, infection had gone deep, puddled and spread. Ian had a fever, chills, and a raging headache. The previously calm-looking spot on his head began to leak puss.
No option: the surgeons opened the site back up, removed a small piece of bone, pulled out the globs of infection, and - yes, in fact, for real: rinsed out the brain till it was "clean."
You can't get all of the infection this way -like all things in the brain, there is a lot you can't see because you can't do a lot of digging. So that's where the antiobiotics come in.
Ian will be on a steady dose of iv antiobiotics for the foreseeable future. The goal is to eradicate the infection, while carefully allowing the wound to heal.
But here's the real problem: He's had a round of Avastin. It prohibits healing. He's had an infection, which negatively affects white blood counts. Both of these facts mean that our treatment of an agressive tumor is on hold. As the doctor said yesterday, "this is very unfortunate timing."
Ian feels well - his headache is gone, with only the surface pain of the surgery causing any discomfort. He's in good spirits; visitors and indulgent foods arrive regularly. From the outside, he looks great. On the inside ... we've yet begun the fight.
Wednesday, July 29, 2015
Even Less Sugar: Telling the Kids
While the kids were at Gramma's during this past ordeal, we discussed how we might shed more light on Ian's situation with them. I read Helping Your Children Cope with Your Cancer and we discussed our desire to have them know as much as possible without overwhelming them. Perhaps giving them a few weeks to settle into their new lives and questions before they head to Camp Kesem, a camp for children of cancer patients/survivors/victims.
A few minutes after Gramma dropped them off:
Ezra: "So, dad, what's up with that tumor?"
Following: THE talk. We explained to the kids that Daddy could die in a year. Or less. Or more. We talked about medicine and tumors.
Ezra teared up a little and came to snuggle with me. Audrey kept building Legos. When Ian said "year," she looked hard at me. I made the "yup, that sucks" face back at her. She lowered her gaze and continued to build.
Ezra asked if there was a telephone booth in heaven. He also has a question about hell pending (he wouldn't ask because he didn't want to SAY "hell," but he said he'd ask tomorrow).
I said, okay, so this is really sad and it sucks. So let's talk about how we do things now.
Me: "My priority is that we 'Live Well.'" What do you think that means?
Ezra: "That we know that if Dad dies then he gets to party with Jesus and if he doesn't die then we can thank God."
Rachel: "And really every day is a blessing and a miracle and we can thank God EVERY day for the life we have and the love we have for one another."
We're going to do things we might have waited longer to do, but we're also not going to DO ALL THE THINGS. We're not going to go to Disney World and the Grand Canyon and all of everywhere because dad's sick. We're going to live as we normally do, and just do our best to love one another and be kind.
Ezra: "Like we're going to Uncle Eric's wedding."
"Yes. We're going to do the things we're able to do and not go crazy trying to do all kinds of things.
It's important that we love one another, that we love God, and that we show His love to others. That's really important to your Dad, and so we need to make that important to us.
All the grownups in your lives, and some of the kids, know our situation. You can feel free to talk to any of them about anything - even if it's something you don't feel like you can say to or ask Mom or Dad. You can even tell them things you WANT them to tell us, but can't tell us yourself.
I'd like to tell your teachers at school next year, so they are aware of what's going on."
Ezra: "So if we start crying they'll know why?"
Rachel: "Yes. Exactly."
--- conversation immediately breaks into Lego logistics. Exactly as it should be.---
There will be more conversations, more questions, more tears. If you love on my kids, be gentle, and allow them to speak. If they act out, I'm sorry ... show them grace, while still pointing out inappropriate behavior. Bad life circumstances are not a license for bad behavior.
A few minutes after Gramma dropped them off:
Ezra: "So, dad, what's up with that tumor?"
Following: THE talk. We explained to the kids that Daddy could die in a year. Or less. Or more. We talked about medicine and tumors.
Ezra teared up a little and came to snuggle with me. Audrey kept building Legos. When Ian said "year," she looked hard at me. I made the "yup, that sucks" face back at her. She lowered her gaze and continued to build.
Ezra asked if there was a telephone booth in heaven. He also has a question about hell pending (he wouldn't ask because he didn't want to SAY "hell," but he said he'd ask tomorrow).
I said, okay, so this is really sad and it sucks. So let's talk about how we do things now.
Me: "My priority is that we 'Live Well.'" What do you think that means?
Ezra: "That we know that if Dad dies then he gets to party with Jesus and if he doesn't die then we can thank God."
Rachel: "And really every day is a blessing and a miracle and we can thank God EVERY day for the life we have and the love we have for one another."
We're going to do things we might have waited longer to do, but we're also not going to DO ALL THE THINGS. We're not going to go to Disney World and the Grand Canyon and all of everywhere because dad's sick. We're going to live as we normally do, and just do our best to love one another and be kind.
Ezra: "Like we're going to Uncle Eric's wedding."
"Yes. We're going to do the things we're able to do and not go crazy trying to do all kinds of things.
It's important that we love one another, that we love God, and that we show His love to others. That's really important to your Dad, and so we need to make that important to us.
All the grownups in your lives, and some of the kids, know our situation. You can feel free to talk to any of them about anything - even if it's something you don't feel like you can say to or ask Mom or Dad. You can even tell them things you WANT them to tell us, but can't tell us yourself.
I'd like to tell your teachers at school next year, so they are aware of what's going on."
Ezra: "So if we start crying they'll know why?"
Rachel: "Yes. Exactly."
--- conversation immediately breaks into Lego logistics. Exactly as it should be.---
There will be more conversations, more questions, more tears. If you love on my kids, be gentle, and allow them to speak. If they act out, I'm sorry ... show them grace, while still pointing out inappropriate behavior. Bad life circumstances are not a license for bad behavior.
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