Rich was discharged today. He has spent 19 of the past 21 days in the hospital. As he often says, “it’s a helluva lot easier getting into the place than it is to get out.”
No shit.
I should be grateful; this was only a four-hour discharge. We’ve had worse. In fact we didn’t know he was being discharged until hospital staff we’ve never met before came in to ask us if we needed any help setting up our home infusion services since he was being discharged today. She asked like she was less sure of the discharge than anything else. I just laughed. “I’m just the wife,” I told her, “nobody tells me anything.”
At 2 pm his nurse since 7 am came in and asked us if he was being discharged today. Sometimes I can’t tell if these people scare me or annoy me.
While I would love to provide staff with the answers to these burning questions, I’m not the Delphi.
At 3 pm a Care Manager comes in to tell us he’s being discharged. Hmm. You’re the one who left me a voice mail to that effect two days ago. Really? Well pardon me if I totally ignore your jokes until I see the discharge paperwork and a wheelchair rolling in.
Next thing I know we’ve got two Care Managers and an RN telling us that “yes, Virginia, there is a Santa Claus and you’ll be out of here in thirty minutes. ”
I actually laughed out loud and said, “oh, let me set my watch.” Apparently someone tattooed “STUPID” on my head last night while I was sleeping. To prove themselves they hand me three prescriptions. Okay, I’ll bite. I start asking questions on all the things I will need to know about home care. Well, that was a hot mess, because no one in the room had the answers. Like, do we have orders for his PICC line care? Are you sending me home with a bag of IV dextrose in case he crashes again, or do I just call 911? How often do I have to check his sugar?
They think it’s every two-hour blood sugar checks. “Well, that’s not going to happen,” I say with a smile that I saw on a serial killer on an episode of Law and Order Criminal Intent. They stare at me. I then explain the concept of sleep hygiene, REM requirements, the use of sleep deprivation as a form of torture and as it relates to Quality of Life….“So I just need ya’ll to understand that when sleep deprivation takes over and I wake up to find him in a hypoglycemic coma AGAIN, I will call the squad and when we get back here I WILL hold a Come to Jesus Meeting with everyone concerned.” Closing with my best Forrest Gump smile.
Now they check the chart, and they’re going to pull the PICC line so no safety stash of dextrose because he’s been stable for twelve (woo-hoo!) hours now, and suddenly his home going orders are for every FOUR hour blood sugar checks. Well, la-de-frickin-da…. What was I worried about?!?!?! Oh yeah, after the last discharge he was stable for 48 hours before I had to call the squad.
They give me the bag of medication from the hospital pharmacy for his every 8-hour injections. I ask if I need syringes. “no, no, this medication is in pre-drawn syringes.” And I believe them, because at his last hospital discharge it was in pre-drawn syringes.
I then begin my Hoover routine where I make huge sucking noises in their general direction to assure them that they are wonderful and I would grovel before them if I weren’t afraid of embarrassing them.
An hour and a half later the nurse comes in to go over the discharge paperwork.
HOLD THE PHONE! I am such a bitch because I’m crossing t’s and dotting I’s and The Discharge orders do NOT match the prescriptions they’ve given me, and she can’t find anything in the chart that explains a change in dosing directions—once daily, twice daily, which is it? She’s off to page the doctor. Nice.
Some time later she comes back, doctors want dosing as per the scripts they just wrote, not what they’ve been doing up till now. Okee-dokee. Then she pulls the PICC line. I head out to get the car. About half way home we realize we won’t make it to the pharmacy before they close. But no worries, we have what we need until tomorrow.
I am on pins and needles. Rich curls up on the couch beside me and the instant his breathing sounds ANYTHING like his coma breathing I nudge him and ask if he’s okay. Now I’m controlling his sleep deprivation. This sucks.
We do his 10:30 high protein snack and his bedtime meds. He gets the pre-filled injections from the bag in the fridge and …. Wait for it…… the medication is in vials, NOT –pre-filled syringes. Not being an IV drug user myself, I find I am totally without syringes. Don’t I feel stupid. Just before my head explodes, I dive back into the fridge and find two syringes of the med from his last discharge that equal the one dose he needs. So we’re okay for tonight, but his net dose is due at 7 am and the pharmacy doesn’t open until 8 and by the time I get it back home it will be 9 am, and with falling blood sugars every minute counts. … It is 11:30 pm.
I pull his Care Manager’s card out of my pocket and I dial her number. Rich points out that she’s not there. Duh. I don’t want to talk to the bitch; I just want to leave a message. “…this is Rich Eitner’s wife. Remember when you assured me I didn’t need syringes because the octreotide is in pre-drawn syringes? Well it’s time for his bedtime dose, I just opened the bag and the medication is in vials and I don’t have syringes. Just so you know. Thank you, and have a nice weekend.”
And they wonder why I don’t have the warm fuzzies???? I’d just like to point out that he was stable for a whole twelve hours before discharge. And they changed the dosing of his meds JUST before they sent him home.
It’s now 1 am and I don’t want to go to sleep. Worse, I don’t want to go upstairs and check on him because I’m afraid of what I’ll find and more afraid of my reaction to what I might find.
I need to stop thinking. I need to surrender to this tsunami and look forward to the meteorite storm that’s heading my way. I need to drink the Kool-aid. I had no idea how much strength it takes just to Believe. Devotedly, helplessly and unfailingly. My problem is that I’m not a passive believer. I’m a Warrior Believer.
It’s 1:05 am. It is Dec 3, 2011. Today is 1,000 days with cancer.
Saturday, December 3, 2011
Thursday, December 1, 2011
Another Math Problem
If an adult human has to set an alarm to wake up EVERY TWO HOURS to take his blood sugar, then eat and/or give himself an injection, how many days will it take until exhaustion causes him to sleep through the alarm and his mate comes home to find him in a hypoglycemic coma?
This is not a rhetorical question. I'm hoping someone can come up with an answer because this seems to be the plan, and his current healthcare providers seem to think that the answer is an infinite amount of days. I, however, calculate it to be within 48 hours of discharge. Granted I'm basing my calculations on my own experience with sleep deprivation. There is a reason it is used as a form of torture.
Yesterday I got a voice mail from a woman who identified herself as Rich's Case Manager at the hospital and they wanted to discharge him the following morning. The problem being that no pharmacy has the medication that must be injected eight times a day so I'll need to be there before the hospital pharmacy closes to get his home going meds, and I'll need to bring a credit card. (apparently they don't trust I will have sufficient funds in my checking account) Hence I was able to deduce that they have worked this math problem to the infinite. Not longer afterwards I get a call from Rich telling me that they are going to discharge him the next day. REALLY?!?!?!? Really....
Here's a math ANSWER for you...43 That is the number of ounces of Scotch it would take to destroy more brain cells than Rich's current discharge plan.
Even the Creator knew to design a newborn human with a stomach that can be filled to a four hour capacity. Why? Because that's the MINIMUM amount of sleep that the newborn and it's caregivers require for survival. It's also why new parents get a few weeks leave from work. Am I missing something here?
When you're dealing with this level of insanity, it's good to have a diversion, so I scurried off to the grocery store. Then I waited in a line for 15 minutes to put $57 worth of gas in my van. Then I defrosted and marinated 5 lbs of chicken thighs so I could grill them the next day so he would have high protein, antibiotic free, hormone free snacks every two hours. I packed up some clothes for him (because EMS took him to the hospital in his jammies) and loaded up the van. Finally I went to bed with my iPod pouring relaxing music into my ears in hopes of staving off nightmare creating panic.
This morning I get a call. His blood sugar dropped to 53 at 2 am following a huge snack just four hours earlier. He's not going anywhere. Later this morning his fasting sugar before lunch was 384.
Don't misunderstand. I'm not faulting anyone here. I understand and appreciate how hard they're working on this. I just worry that they're focused on the science and forgetting the reality of being human. A plan that involves waking every two hours may in fact control the blood sugar, but what quality of life does that offer? Think about it people! Rich is a human being, not just a collection of lab results.
All that anxiety and prep for nothing. I need to stop taking these people seriously.
My heart aches every time I talk to him. He sounds like... like.... oh yeah, like someone who's been awakened every two hours for THREE WEEKS. It's hard to say what he wants more, home or sleep. As I am conflicted between wanting him home and wanting him safe.
My pom-pons are getting pretty ragged, and I'm even nauseated by my efforts to cheer him on. A few days ago he stopped being angry. He no longer cares. He doesn't want me to come to see him after work. He knows I'm tired and stressed and it's an hour and fifteen minutes from work to his bedside and then another forty minutes from his bedside to my bed. When I am there, I crawl into bed beside him and he goes to sleep. Mostly he's too tired to even talk.
My only source of information is Rich and I'm thinking that anyone capable of reading this can figure out that I'd be better off reading tea leaves. I am floating on blind faith at this point.
I keep telling myself that he's not giving up, he's just exhausted.
He didn't see any of his doctors today. But the hospital pharmacist came to see him. I have worked in a hospital, and over many years I have known and heard of people who were patients in a hospital and I have NEVER heard of any patient being visited by the hospital's pharmacist.
When I asked, all Rich could tell me was that he wanted to tell him about all the research they're doing and the things they're trying to tweak. They're going to add prednisone to the octreotide and I'm trying not to wonder if steroids effect cancer cells the same way they effect muscle cells. Then the pharmacist told him, "we've just never seen anything like this before."
AHA!! You wanted to see for yourself! You wanted to meet him. I guess the doctor was right when she told me that "everyone here knows about Rich." I'm starting to think Rich is the Forrest Gump of pancreatic cancer.
My frustration and venting aside, I love these people for working so hard for him and I feel their pain. I pray for all of them constantly. Rich and I have talked about this, and we truly believe he could not be in better hands.
It's not what you know, it's how good you are at finding out.
This is not a rhetorical question. I'm hoping someone can come up with an answer because this seems to be the plan, and his current healthcare providers seem to think that the answer is an infinite amount of days. I, however, calculate it to be within 48 hours of discharge. Granted I'm basing my calculations on my own experience with sleep deprivation. There is a reason it is used as a form of torture.
Yesterday I got a voice mail from a woman who identified herself as Rich's Case Manager at the hospital and they wanted to discharge him the following morning. The problem being that no pharmacy has the medication that must be injected eight times a day so I'll need to be there before the hospital pharmacy closes to get his home going meds, and I'll need to bring a credit card. (apparently they don't trust I will have sufficient funds in my checking account) Hence I was able to deduce that they have worked this math problem to the infinite. Not longer afterwards I get a call from Rich telling me that they are going to discharge him the next day. REALLY?!?!?!? Really....
Here's a math ANSWER for you...43 That is the number of ounces of Scotch it would take to destroy more brain cells than Rich's current discharge plan.
Even the Creator knew to design a newborn human with a stomach that can be filled to a four hour capacity. Why? Because that's the MINIMUM amount of sleep that the newborn and it's caregivers require for survival. It's also why new parents get a few weeks leave from work. Am I missing something here?
When you're dealing with this level of insanity, it's good to have a diversion, so I scurried off to the grocery store. Then I waited in a line for 15 minutes to put $57 worth of gas in my van. Then I defrosted and marinated 5 lbs of chicken thighs so I could grill them the next day so he would have high protein, antibiotic free, hormone free snacks every two hours. I packed up some clothes for him (because EMS took him to the hospital in his jammies) and loaded up the van. Finally I went to bed with my iPod pouring relaxing music into my ears in hopes of staving off nightmare creating panic.
This morning I get a call. His blood sugar dropped to 53 at 2 am following a huge snack just four hours earlier. He's not going anywhere. Later this morning his fasting sugar before lunch was 384.
Don't misunderstand. I'm not faulting anyone here. I understand and appreciate how hard they're working on this. I just worry that they're focused on the science and forgetting the reality of being human. A plan that involves waking every two hours may in fact control the blood sugar, but what quality of life does that offer? Think about it people! Rich is a human being, not just a collection of lab results.
All that anxiety and prep for nothing. I need to stop taking these people seriously.
My heart aches every time I talk to him. He sounds like... like.... oh yeah, like someone who's been awakened every two hours for THREE WEEKS. It's hard to say what he wants more, home or sleep. As I am conflicted between wanting him home and wanting him safe.
My pom-pons are getting pretty ragged, and I'm even nauseated by my efforts to cheer him on. A few days ago he stopped being angry. He no longer cares. He doesn't want me to come to see him after work. He knows I'm tired and stressed and it's an hour and fifteen minutes from work to his bedside and then another forty minutes from his bedside to my bed. When I am there, I crawl into bed beside him and he goes to sleep. Mostly he's too tired to even talk.
My only source of information is Rich and I'm thinking that anyone capable of reading this can figure out that I'd be better off reading tea leaves. I am floating on blind faith at this point.
I keep telling myself that he's not giving up, he's just exhausted.
He didn't see any of his doctors today. But the hospital pharmacist came to see him. I have worked in a hospital, and over many years I have known and heard of people who were patients in a hospital and I have NEVER heard of any patient being visited by the hospital's pharmacist.
When I asked, all Rich could tell me was that he wanted to tell him about all the research they're doing and the things they're trying to tweak. They're going to add prednisone to the octreotide and I'm trying not to wonder if steroids effect cancer cells the same way they effect muscle cells. Then the pharmacist told him, "we've just never seen anything like this before."
AHA!! You wanted to see for yourself! You wanted to meet him. I guess the doctor was right when she told me that "everyone here knows about Rich." I'm starting to think Rich is the Forrest Gump of pancreatic cancer.
My frustration and venting aside, I love these people for working so hard for him and I feel their pain. I pray for all of them constantly. Rich and I have talked about this, and we truly believe he could not be in better hands.
It's not what you know, it's how good you are at finding out.
Sunday, November 27, 2011
Here's a Math problem for you...
How many times over how many days does a board certified Endocrinologist have to write nursing orders so that the patient does NOT receive juice when his blood sugars drop below 70 because they want him to have MILK? No Juice, give milk.
Don't ponder it too long, or as Lewis Black would say, "blood will spurt out of your nose."
I know this because I was fighting a nosebleed as I drove home from the hospital this evening.
In the handful of visits I've had with Rich, every time his blood sugar has dropped and in comes nursing staff (NOT an LPN) with juice, and we have to point out that he is not supposed to have juice. He finally admitted to me that it has happened repeatedly when I'm not there. Okay, it happens every gawd-damned time. Really? Really. What the fuck would happen if he weren't capable of directing his care?! Personally I'm a bit weary of hearing the doctor reinforce this directive to ME when staff can't grasp the concept. No, really, I get it, doc, why don't you have this chat with staff?
No, I take that back--why don't you have this chat with the freakin' bean counters who determined patient care would not suffer by firing 72 LPNs, with the goal of replacing them with 20 new graduate RNs. Ma head done damn wanna explode!!!!!
Because seriously, there is no better nursing staff on the planet than AGMC nurses. At the same time, the laws of physics dictate that the best of the best still has only two hands and a finite amount of time and at this point is not capable of being in more than one place at one time.
Is anyone listening?!?!?! Basic logic, people. You can't spread one tablespoon of peanut butter across a three foot slice of bread. Duh.
All that aside.
I made a huge batch of Pupshn special Mix. Walnuts, roasted soybeans, almonds, pumpkin seeds, dried papaya, pineapple, cranberries, raisins, blueberries and cherries. I don't even want to tell you how expensive THAT snack is. I toted four pints of it to him, nicely packaged for his snacking convenience. He munched on that for a solid three hours before they checked his blood sugar and it was 61. That and two clementine oranges. Seriously, as much as I want him home, I'm scared to death that I can't stay on top of this. I've had three newborns that were less maintenance. And I was in my early twenties, not working full time outside the home. From experience I can say that if I could breastfeed my way through this I might stand a chance; as it is, I'm screwed.
It's been a long four days of people enjoying their four day weekend, rightfully so. Maybe tomorrow our doctors will hear back from the doctors they're in contact with. Maybe in a day or two or three we'll be closer to a plan that will make this livable.
He's trying so hard to be positive. He's struggling with the fear and frustration and the gob-stopping awful sleep deprivation. How would you like to be awakened every two hours for a needle in your mangled finger; and get up at three AM to eat a full meal? And why can't they test his sugar on his arm like commercial units can do? At every two hours for 8 days, his fingertips are starting to look like raw meat.
I'm running out of positive, reinforcement shit to say that doesn't insult what's left of our collective common sense.
I trimmed his big ole Captain Kangaroo mustache and it seemed to genuinely lift his spirits.
Wow. That's what I'm able to bring to the table. A mustache trim, a back rub, lotion massaged into his feet, Pupshn Mix and "wow, it sucks to be YOU!"
I'm sort of looking forward to tomorrow.
Don't ponder it too long, or as Lewis Black would say, "blood will spurt out of your nose."
I know this because I was fighting a nosebleed as I drove home from the hospital this evening.
In the handful of visits I've had with Rich, every time his blood sugar has dropped and in comes nursing staff (NOT an LPN) with juice, and we have to point out that he is not supposed to have juice. He finally admitted to me that it has happened repeatedly when I'm not there. Okay, it happens every gawd-damned time. Really? Really. What the fuck would happen if he weren't capable of directing his care?! Personally I'm a bit weary of hearing the doctor reinforce this directive to ME when staff can't grasp the concept. No, really, I get it, doc, why don't you have this chat with staff?
No, I take that back--why don't you have this chat with the freakin' bean counters who determined patient care would not suffer by firing 72 LPNs, with the goal of replacing them with 20 new graduate RNs. Ma head done damn wanna explode!!!!!
Because seriously, there is no better nursing staff on the planet than AGMC nurses. At the same time, the laws of physics dictate that the best of the best still has only two hands and a finite amount of time and at this point is not capable of being in more than one place at one time.
Is anyone listening?!?!?! Basic logic, people. You can't spread one tablespoon of peanut butter across a three foot slice of bread. Duh.
All that aside.
I made a huge batch of Pupshn special Mix. Walnuts, roasted soybeans, almonds, pumpkin seeds, dried papaya, pineapple, cranberries, raisins, blueberries and cherries. I don't even want to tell you how expensive THAT snack is. I toted four pints of it to him, nicely packaged for his snacking convenience. He munched on that for a solid three hours before they checked his blood sugar and it was 61. That and two clementine oranges. Seriously, as much as I want him home, I'm scared to death that I can't stay on top of this. I've had three newborns that were less maintenance. And I was in my early twenties, not working full time outside the home. From experience I can say that if I could breastfeed my way through this I might stand a chance; as it is, I'm screwed.
It's been a long four days of people enjoying their four day weekend, rightfully so. Maybe tomorrow our doctors will hear back from the doctors they're in contact with. Maybe in a day or two or three we'll be closer to a plan that will make this livable.
He's trying so hard to be positive. He's struggling with the fear and frustration and the gob-stopping awful sleep deprivation. How would you like to be awakened every two hours for a needle in your mangled finger; and get up at three AM to eat a full meal? And why can't they test his sugar on his arm like commercial units can do? At every two hours for 8 days, his fingertips are starting to look like raw meat.
I'm running out of positive, reinforcement shit to say that doesn't insult what's left of our collective common sense.
I trimmed his big ole Captain Kangaroo mustache and it seemed to genuinely lift his spirits.
Wow. That's what I'm able to bring to the table. A mustache trim, a back rub, lotion massaged into his feet, Pupshn Mix and "wow, it sucks to be YOU!"
I'm sort of looking forward to tomorrow.
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