Rich forgot that he had told me last night that he would call me this morning when he got up. Around 10:30 I stopped my chores and called him. He sounded in exceptionally fine spirits.
He had news. His ICU nurse was setting him up for a Cortisone Stem Test. He explains they will inject “stuff” into him and two hours later they will draw blood. I want to know if he needs to be fasting and how is that going and ….
No, no fasting, he's eating and this test will give them the information they need. No fasting, no problem.
ARE YOU FUCKING KIDDING ME?
I can feel the brain cells exploding in my head. But I can't explode on Rich, so all I can offer is.... “Wow, who stayed up all night to develop this brand new test? ... I must thank them.”
Thankfully my sarcasm is lost on Rich—he's happy and chirpy and making new best friends. I asked him three times to repeat it because I'm thinking he's confused, and what fabric of the universe was ripped open last night to get us from there to here? My head is spinning. He asks his nurse and I hear her faintly in the background and he repeats it to me. Really? Really. “Yeah,” he says, “they decided they can't do the tests they want because my blood sugar drops too low if I'm fasting. It was 38 yesterday and they couldn't rouse me.” Really? Really.... So now they're going to do THIS test and it should give them what they need.
He then asks me when I'm coming in to see him. I can FEEL my frontal lobe attempt light, non-sensical responses while the deeper part of my survival brain cells scramble for an excuse, any excuse not to have a close encounter with his health care professionals.
No worries, he is happily distracted by his efforts to charm his nurse. I just want OFF the phone because I feel like I need to throw up and I prefer some privacy for that.
Then he tells me, “no rush, the nurses are going to come in and help me get cleaned up.”
Shit. I forgot to muzzle Scrapper.
“What? Your arms are broke?” I tried to chuckle and present it all as a joke but I couldn't get the muzzle back on... “I think you can get washed up by yourself dear. The nurses are busy.”
He assures me that they offered, and Scrapper is yapping at my heels wanting to know if his golf buddies follow him into the woods when he needs to.... SHUT UP, Scrapper, and then Rich tells me what he'd like me to bring to him when I come in and I was PLEASANT.
We end the conversation with me telling him I'm washing the windows of the kitty spit, doing laundry, dishes and trying to catch up on all the things that have not gotten done since Wednesday night. “Love you.....” “Love you, too.”
Fuck, fuck Fuck, Fuck, Fuck. It's like my new mantra.
Does anyone catch my dilemma here????
I would love to go in and see my husband. I want to see him fluffed up and comfy in his ICU bed and hear the nurses tell me how amazing and wonderful he is. I do. Because....well.... it's just something I never get tired of. My dilemma is—I just don't think I can experience that level of Joy without throwing up on their shoes. Worse, what if one of his doctors comes in to bring me up to date on all the things they've endured because they refused to listen to me and how they are now going to fix the problem that I warned them about before it happened. No wait. More “worser”.... How will I placidly listen to them explain this brilliant 2 hour, non-fasting Cortisone Stem test that just became available TODAY? I fear I might tremble in the sight of their brilliance and wet myself.
Contemplating the past, present and future; factoring in my limited knowledge of quantum physics, parallel universes, multiple dimensions and “S= K log W”...... I feel strongly that it would be in everyone's best interest, least of all my own, if I removed myself from the gravitational pull of the work they are doing. Rich needs a break from me. I must not be a pebble in the doctors' shoes.
I think it best if I continue to clean and fluff the nest so it is ready when Rich flies away home.
It's a no brainer...if I fail to visit him, I'm a heartless bitch; if I visit him and fail to swallow I'm a nauseated heartless bitch; if I challenge, question or speak up, I'm a raging heartless bitch... No matter what course I take I am a heartless bitch. I choose asking forgiveness over asking permission.
I need to learn to embrace the empowerment of boundaries. They do not come into my space, I should not enter theirs. They bring their skill set to the healing of Rich and I bring mine. I don't need their respect, neither do I need their negativity.
I'm here, Rich. Feathering the nest and recharging my battery.
Call me if you need a ride.
Saturday, November 12, 2011
A Dining Experience
While I'm waiting to find out what the AMA has planned for us today, I thought I'd let you know how our Fifteenth Anniversary dinner went last weekend. I should be doing chores right now, but blogging the experience will be good practice for the letter I plan to write to the head of the company.
All by himself, Rich made reservations at a top notch steak house in Fairlawn. He decided to do something totally different—somewhere we'd never been. He selected the place because a few years ago I had visited one of these restaurants while in Columbus., OH and talked about how wonderful it was for weeks. Impeccable food and probably the best dining service I had ever received. Needless to say, we were looking forward to the evening. Rich told the gentleman on the phone that this was a special wedding anniversary for us...
Last Saturday came and as always I was on pins and needles just because it's hard to make plans when you never know how the cancer wants to play. As the day wore on I tried to stay positive while I prepared myself for the disappointment of not going. Rich's blood sugars were all over the place, I kept nagging him to eat every couple of hours. All he wanted to do was sleep. He had several two hour naps. At four o'clock I started hinting that we might want to cancel our 6:30 reservations, but Rich was having NONE of that.
I kept moving forward, preparing to stop. I actually got dressed up. Hope ya'll are sitting down because I wore a dress. Rich struggled and managed to get a shower and dressed, and by the time we left the house his smile seemed genuine.
We arrive on the dot and are shown to our romantic table for two. Red Flag number One. They seated us at one of those curved booth tables that seat six side by side. I'll repeat that. The only way to sit was side by side. So much for that all-critical, courtship eye contact that they talk about on the Discovery Channel. The girl who seated us struggled to pull it out far enough for us to slide in. I'm thinking if Rich has to dash to the restroom we're screwed.
After awhile we asked for and received water, Rich received his beer in a bottle and I was curious as to why all the other diners received chilled Pilsner glasses. But not Rich. Red Flags Two Three and Four.
Our salads arrived on HOT plates—probably just out of the dishwasher so, woo-hoo, they're clean!!!
By this time, and we were sipping, we were ready for another drink. But nobody asked.
Sitting side by side as we were it was more like being in a movie than a romantic dinner. I tried to distract myself by watching the dining room in front of us and listing to the kitchen chatter directly behind us. Rich pointed out the Happy Anniversary card sitting on our table. That's nice.
Gradually my attention is focused to the table directly in front of with six happy diners who are being doted on by our shared waiter. With an open bottle of wine on their table, he scurried around to make sure he kept their glasses at their proper level; scurried away and returned with more bread; whisked away dirty plates and glasses. At 7:50 I turned to Rich and tried to smile, which probably didn't look like a smile because when I have to rotate my neck 90 degrees I get a shooting pain down my right arm.
The gift of a fifteen year honeymoon is that he can often read my mind, and once in awhile he does it at the right time. We grabbed our coats (no, no one offered to take them at the front) and muscled our way out from behind our table. By the time we reached the front desk, three people in suits descended upon us and I was almost disappointed that they weren't security threatening to charge me for walking the bill. But no.
Rich tells me that I don't understand what happens when I get truly angry. He says my voice gets so quiet you have to lean in to hear me, and every word slips out like honey wrapped in a snarl, fire comes out of my eyes, smoke comes out of my ears, and in general I exude an energy that would back down the Devil. I don't know about that, I just wanted the bill. That's when they wanted to know what was wrong, it went like this:
“Nothing's wrong”, I smiled, “I just want the bill so we can leave.”
Asshole no. 2: “No, no, we want to know what's wrong.”
ME: “Apparently our presence is creating a hardship for your staff, so we're going to correct that.”
Asshole no. 3: “Oh no, we'll clear the check.”
Meanwhile Rich is explaining to Asshole No. 1 the details of our 80 minute dining experience.
ME: “I did not come here for a free meal. We came for a special occasion. I'd like to pay for what we received.”
Asshole no 2. “Wasn't your table decorated?”
At that, I could begin to feel the heat coming off me. I just looked at him like he had two heads.
Now Asshole no 3. comes running back to the scene from the netherworld and announces with great relief that our meals are now ready and being boxed up for us.
ME: “Sir, you REALLY do not want me to tell you where to place those meals.”
Asshole No 1. still wants to discuss things.
ME: “Look, you folks are way too busy here to be disturbed by us. Have a nice night.”
When he forced his business card into my hand and asked me to call him later because he just wants to make this right...... I almost pulled the muzzle off of Scrapper. Instead I moved closer to him and he backed up and I whispered “You have no idea what happened here and YOU can't fix it.”
All I remember are the words that were exchanged. Rich had to explain how it went down from an observer's (his) perspective. For me, I wouldn't even recognize them if I ran into them again. For me it was like experiencing the whole thing through billowing red gauze. All the way home I kept asking Rich, “I didn't raise my voice, did I?” “I didn't embarrass you, did I?” Rich just laughed. He said he didn't say much because it was more fun to watch me. I've had so much practice I could teach a Doctoral course in idiots and assholes.
On the way home we decided to stop at our favorite place—Prime 93 on Manchester Road in Portage Lakes. THEY made it right.
All by himself, Rich made reservations at a top notch steak house in Fairlawn. He decided to do something totally different—somewhere we'd never been. He selected the place because a few years ago I had visited one of these restaurants while in Columbus., OH and talked about how wonderful it was for weeks. Impeccable food and probably the best dining service I had ever received. Needless to say, we were looking forward to the evening. Rich told the gentleman on the phone that this was a special wedding anniversary for us...
Last Saturday came and as always I was on pins and needles just because it's hard to make plans when you never know how the cancer wants to play. As the day wore on I tried to stay positive while I prepared myself for the disappointment of not going. Rich's blood sugars were all over the place, I kept nagging him to eat every couple of hours. All he wanted to do was sleep. He had several two hour naps. At four o'clock I started hinting that we might want to cancel our 6:30 reservations, but Rich was having NONE of that.
I kept moving forward, preparing to stop. I actually got dressed up. Hope ya'll are sitting down because I wore a dress. Rich struggled and managed to get a shower and dressed, and by the time we left the house his smile seemed genuine.
We arrive on the dot and are shown to our romantic table for two. Red Flag number One. They seated us at one of those curved booth tables that seat six side by side. I'll repeat that. The only way to sit was side by side. So much for that all-critical, courtship eye contact that they talk about on the Discovery Channel. The girl who seated us struggled to pull it out far enough for us to slide in. I'm thinking if Rich has to dash to the restroom we're screwed.
After awhile we asked for and received water, Rich received his beer in a bottle and I was curious as to why all the other diners received chilled Pilsner glasses. But not Rich. Red Flags Two Three and Four.
Our salads arrived on HOT plates—probably just out of the dishwasher so, woo-hoo, they're clean!!!
By this time, and we were sipping, we were ready for another drink. But nobody asked.
Sitting side by side as we were it was more like being in a movie than a romantic dinner. I tried to distract myself by watching the dining room in front of us and listing to the kitchen chatter directly behind us. Rich pointed out the Happy Anniversary card sitting on our table. That's nice.
Gradually my attention is focused to the table directly in front of with six happy diners who are being doted on by our shared waiter. With an open bottle of wine on their table, he scurried around to make sure he kept their glasses at their proper level; scurried away and returned with more bread; whisked away dirty plates and glasses. At 7:50 I turned to Rich and tried to smile, which probably didn't look like a smile because when I have to rotate my neck 90 degrees I get a shooting pain down my right arm.
The gift of a fifteen year honeymoon is that he can often read my mind, and once in awhile he does it at the right time. We grabbed our coats (no, no one offered to take them at the front) and muscled our way out from behind our table. By the time we reached the front desk, three people in suits descended upon us and I was almost disappointed that they weren't security threatening to charge me for walking the bill. But no.
Rich tells me that I don't understand what happens when I get truly angry. He says my voice gets so quiet you have to lean in to hear me, and every word slips out like honey wrapped in a snarl, fire comes out of my eyes, smoke comes out of my ears, and in general I exude an energy that would back down the Devil. I don't know about that, I just wanted the bill. That's when they wanted to know what was wrong, it went like this:
“Nothing's wrong”, I smiled, “I just want the bill so we can leave.”
Asshole no. 2: “No, no, we want to know what's wrong.”
ME: “Apparently our presence is creating a hardship for your staff, so we're going to correct that.”
Asshole no. 3: “Oh no, we'll clear the check.”
Meanwhile Rich is explaining to Asshole No. 1 the details of our 80 minute dining experience.
ME: “I did not come here for a free meal. We came for a special occasion. I'd like to pay for what we received.”
Asshole no 2. “Wasn't your table decorated?”
At that, I could begin to feel the heat coming off me. I just looked at him like he had two heads.
Now Asshole no 3. comes running back to the scene from the netherworld and announces with great relief that our meals are now ready and being boxed up for us.
ME: “Sir, you REALLY do not want me to tell you where to place those meals.”
Asshole No 1. still wants to discuss things.
ME: “Look, you folks are way too busy here to be disturbed by us. Have a nice night.”
When he forced his business card into my hand and asked me to call him later because he just wants to make this right...... I almost pulled the muzzle off of Scrapper. Instead I moved closer to him and he backed up and I whispered “You have no idea what happened here and YOU can't fix it.”
All I remember are the words that were exchanged. Rich had to explain how it went down from an observer's (his) perspective. For me, I wouldn't even recognize them if I ran into them again. For me it was like experiencing the whole thing through billowing red gauze. All the way home I kept asking Rich, “I didn't raise my voice, did I?” “I didn't embarrass you, did I?” Rich just laughed. He said he didn't say much because it was more fun to watch me. I've had so much practice I could teach a Doctoral course in idiots and assholes.
On the way home we decided to stop at our favorite place—Prime 93 on Manchester Road in Portage Lakes. THEY made it right.
Friday, November 11, 2011
We interrupt this Blog for a message from our Complaint Department...
Hi-dee-ho. Scrapper Here.....
Bite me.
Responding to the complaints that the blog has become too negative, I offer the following:
Are you fucking kidding me?
Number One: go back and read our Disclaimer. Don't think you've got a lawsuit for stress resulting from reading this blog. Unless, of course, there's a commercial for the lawyer who won't get paid until you get paid and this blog is causing cancer. You'll need proof. We would be happy to recommend the medical experts who can make THAT happen for you.
B: We're not responsible if your computer came without a Delete button. Contact the manufacturer. The Blog does not stream into your space; it's not even that easy to find.
ALSO: Step away from the pain.
#4. What part of the Mission Statement of this blog did you not get?!?! Nowhere does it state that our goal is to put a romantic, rosy spin on fighting cancer. It's a FIGHT, asshole. Not pretty. This is a spew of fear mingled with frustration, coated in love, drowning in tears, waiting for Godot. The purpose being to purge the negative in order to continue the fight. Move along. Do not slow down to stare at the wreck and then bitch about the traffic. You probably think reality TV is real.
C. As for the postings that slip past Radar and don't get edited and spell-checked before posting..... Bite me Twice. I have been in the room when patients have literally thrown up on her and her focus remained on comforting them, so if she needs to throw up on her blog and you don't need a dry-cleaner as a result.... SHUT UP. What do you think your “reality” shows would look like without editing?
#5) If you think you can do a better job with this situation, bring your A game and show your stuff, because thousands could benefit from your wisdom and expertise. Don't hide your light under a basket! You get bonus points if you can do it sleep-deprived.
We appreciate your comments and input as we strive to make sure that nothing about this blog makes YOU uncomfortable. NOT. But hey, keep those emails and comments coming, because the more you send, the more often I'm let off my leash.
Sincerely,
Scrapper.
VP of Customer Service
Bite me.
Responding to the complaints that the blog has become too negative, I offer the following:
Are you fucking kidding me?
Number One: go back and read our Disclaimer. Don't think you've got a lawsuit for stress resulting from reading this blog. Unless, of course, there's a commercial for the lawyer who won't get paid until you get paid and this blog is causing cancer. You'll need proof. We would be happy to recommend the medical experts who can make THAT happen for you.
B: We're not responsible if your computer came without a Delete button. Contact the manufacturer. The Blog does not stream into your space; it's not even that easy to find.
ALSO: Step away from the pain.
#4. What part of the Mission Statement of this blog did you not get?!?! Nowhere does it state that our goal is to put a romantic, rosy spin on fighting cancer. It's a FIGHT, asshole. Not pretty. This is a spew of fear mingled with frustration, coated in love, drowning in tears, waiting for Godot. The purpose being to purge the negative in order to continue the fight. Move along. Do not slow down to stare at the wreck and then bitch about the traffic. You probably think reality TV is real.
C. As for the postings that slip past Radar and don't get edited and spell-checked before posting..... Bite me Twice. I have been in the room when patients have literally thrown up on her and her focus remained on comforting them, so if she needs to throw up on her blog and you don't need a dry-cleaner as a result.... SHUT UP. What do you think your “reality” shows would look like without editing?
#5) If you think you can do a better job with this situation, bring your A game and show your stuff, because thousands could benefit from your wisdom and expertise. Don't hide your light under a basket! You get bonus points if you can do it sleep-deprived.
We appreciate your comments and input as we strive to make sure that nothing about this blog makes YOU uncomfortable. NOT. But hey, keep those emails and comments coming, because the more you send, the more often I'm let off my leash.
Sincerely,
Scrapper.
VP of Customer Service
Can I get a Revolving Door Installed here?
Rich was admitted this morning. That sentence alone should be enough to let you know that I cannot consume enough Scotch to keep my head from exploding. Why, you ask? Because no matter how many times I have to take the bus to Stupidville, it just never gets old. Always new sites to see and new people to meet.
First off, I had some concerns because they recently fired all of their (seventy-plus) LPNs. Apparently, overworking their RN's and relying more on nursing assistants who are addicted to their iPhones seems like a cost effective way to go. I kept my concerns to myself.
Out of the gate we sit at the Admissions desk where we learn that the insurance Rich has had for 20+ years has mismatched policy numbers. The number on his card does not match the number in their computer. I could write another five pages on this situation, but why bother.....why bother....
Then we get up to his room. Because somebody was called over to walk us up to the room. Despite the fact that I assured him I had worked here for over five years and we could find our way. Nope. Someone had to escort us up to his room. Where there was no pillow OR blanket, but there was a washcloth folded into the shape of a teddy bear. I was impressed. I'm just relieved that these cost-cutting measures are working.
The RN –who was lovely—did his admission. Directly on the computer. And while I understand that sometimes things change, I don't understand why I have to explain who his doctors are and his diagnoses and what procedures he has already had done AT THIS FACILITY.
So all the admission stuff is done and Rich lays down because part of what's going on causes him to be either sleeping or exhausted. I read while we waited for somebody to get this show on the road, and it was not too much later that the Hospitalist came in and I liked that he first introduced himself, shook our hands and then pulled up a chair and sat next to Rich. He did an extremely thorough intake, including my detailed account of Wednesday night and the past 2-3 weeks of this situations, and that's when I should have left, my hopes intact. But no. For a foggy, sleep-deprived moment, I don't recognize that I really am in Stupidville.
We are now at the point where Dr. P starts explaining what they're going to do. A twelve hour fast, with blood draws at critical points because this information will tell them what's causing the constant flood of insulin in his body—the liver is not releasing sugar or there are tumors producing insulin. Distracted by his excellent first impression and the origami terry cloth bear perched next to him, I have confidence in asking a couple of questions......
I explained YET AGAIN, that if Rich goes more than 3 hours without eating, his blood sugar drops into the forties. When I found him Wednesday night it was 31, and at most that was a 10 hour fast. So, and here's my question, “how are you going to do a 12 hour fast and keep him from going into hypoglycemic shock?” Dr. P just stared at me with the too familiar expression that tells me I have just spoken a foreign language.
I decided to throw him a bone. And asked....”how often will you be checking his blood sugars,” because, AND I'm PROVIDING THIS INFORMATION AGAIN.... “he will not have any symptoms.”
Dr P rattled off the signs and symptoms of hypoglycemia AGAIN, and Rich and I both shook our heads with each one AGAIN. So I 'splained it again, Lucy. “He does not have any signs of hypoglycemia. He closes his eyes and goes to sleep and you won't know he's in trouble unless you check his sugars, OR he reaches the point of death-rattle breathing, gurgling, foaming at the mouth and unresponsive. “
You would think that after last year's sepsis sans symptoms, I could get them to understand that Rich doesn't have symptoms. I suspect this is because he doesn't want to inconvenience anyone so he just swallows it all down, which according to my scientific research, is why he developed pancreatic cancer in the first place.
Now Dr. P looks at me like not only I'm a speaking a foreign language but he'd really like me to just leave the room. Wait for it....
the Babble fish kicked in and Dr P decides to respond to me with “I can order 2 hour blood sugars, but that's not going to make the staff very happy.” The words were wrapped in just enough of a smile that I wasn't sure if he was failing at humor or calling me demanding and/or stupid.
I explain AGAIN how this has been working---”I'm not saying you have to test him every two hours, I'm just suggesting you might want to come in, check him, make sure he wakes up”, and if you pull your nursing assistants away from their iPhones, I think they can handle that task. Sorry. I can't forget the night Rich spent 45 minutes on a bedside commode and the nursing assistant came into his room texting.
But Dr P has a better idea. “How about you stay the night and check him every two hours.” I swear to god it sounded like an innocent suggestion but my head wanted to explode. I smiled sweetly and explained that “I've been doing the two hour gig non-stop since Wednesday night, so I'd sort of like to get some sleep.” Because when I get the bill for this trip, I'm going to be a little pissed that it's not discounted for my services.
My next question is “You're going to put a hep-lock in, right?” (That's an IV access that's waiting and ready if needed) Again someone looking at my two heads. I splain it for him, Lucy..... “When he crashes during this 12 hour fast, I'm just thinking you might want that IV access quickly, and I'm just letting you know he's a very difficult stick” He nods and writes on the chart, which could be a hep-lock order OR “wife is pain in the ass.”
We've pretty much covered everything to the Doctor's satisfaction. Rich is exhausted, I'm exhausted, and repeating a thing don't make it better so I'm ready to go home and Rich wants to sleep. We are now 2 hours 45 minutes from last food consumption. Since I didn't think to bring my video camera, I don't need to stick around and watch this parade, and there's going to be a huge bill for someone else to clean up the elephant poop, so....I'm good. It's 11:30, I'm leaving. I warned you people. In triplicate.
Around 3 pm the phone rings. I cannot explain what a bone jarring sound that is when you're half asleep and part of your brain is programmed to be ready for a call from the hospital.
It was Rich. He sounded drunk, which meant he could only do a half-assed job of telling me what was going on.
“They were running around like crazy, Pupshn. They kept running in and out of my room and giving me shots. They said I can't stay here. They're moving me to intensive care. ...I don't know what they're doing....” Click.
Geez. Sorry I missed that. The Elephant pooped and I wasn't there to see it.
The only reason I didn't call the hospital is because I'm thinking they really don't need any distractions right now. An hour later I get a call from his nurse to let me know that he's being moved to ICU because they don't have enough staff to do two hour checks. Right now I cannot even comment on that because I can't get past the 72 LPN's who lost their jobs. Neither can I get past the fact that I warned these people how it was going to go down, so how did you not know at admission that you couldn't handle two hour checks?!?!?!
Another hour later and Rich calls me to tell me where he is and what happened according to what he was told because he doesn't remember SHIT about it. He sounds good. Because he's been eating. So the bad news is, he has to eat the hospital food anyway. Update goes like this.... the doctor's now have no idea what they're going to do because they couldn't collect the fasting data they needed. They want to know if this problem is the result of the liver not releasing glucose, or tumors starting to produce insulin, and that requires 12 hour fasting bloodwork. And they seemed shocked that their plan didn't work. It was a good plan!
Well, here's a plan. I call it “What the Fuck?!?!?” Either the liver isn't working or tumors are producing insulin. Either way, I don't care. FIX IT! If you can put a goddamned pump in someone to release insulin as needed, why can't you insert a pump to release a steady flow of dextrose as needed?
Whatever, nobody's listening to me anyway.
A definition of insanity is repeating a behavior with the expectation of a different outcome. Doesn't look good for me, now does it?
Last night, as we're bracing ourselves for the return to Stupidville, I asked Rich if he remembered anything from Wednesday night. Mainly I wanted to know if he'd had any awareness, fear, pain or discomfort. No to all. Shit. That is information I should not have been given.
In hindsight, I've been asking myself all evening if I did the right thing Wednesday night. I'll admit it. For a split second before calling 911, I thought of crawling into bed with him and just holding him until it was over. It was barely a complete thought, not even recognizable until after the fact. In remembering that nano-second I realize I didn't call 911 for Rich. I called for me. Because I'm not ready to be here without him.
First off, I had some concerns because they recently fired all of their (seventy-plus) LPNs. Apparently, overworking their RN's and relying more on nursing assistants who are addicted to their iPhones seems like a cost effective way to go. I kept my concerns to myself.
Out of the gate we sit at the Admissions desk where we learn that the insurance Rich has had for 20+ years has mismatched policy numbers. The number on his card does not match the number in their computer. I could write another five pages on this situation, but why bother.....why bother....
Then we get up to his room. Because somebody was called over to walk us up to the room. Despite the fact that I assured him I had worked here for over five years and we could find our way. Nope. Someone had to escort us up to his room. Where there was no pillow OR blanket, but there was a washcloth folded into the shape of a teddy bear. I was impressed. I'm just relieved that these cost-cutting measures are working.
The RN –who was lovely—did his admission. Directly on the computer. And while I understand that sometimes things change, I don't understand why I have to explain who his doctors are and his diagnoses and what procedures he has already had done AT THIS FACILITY.
So all the admission stuff is done and Rich lays down because part of what's going on causes him to be either sleeping or exhausted. I read while we waited for somebody to get this show on the road, and it was not too much later that the Hospitalist came in and I liked that he first introduced himself, shook our hands and then pulled up a chair and sat next to Rich. He did an extremely thorough intake, including my detailed account of Wednesday night and the past 2-3 weeks of this situations, and that's when I should have left, my hopes intact. But no. For a foggy, sleep-deprived moment, I don't recognize that I really am in Stupidville.
We are now at the point where Dr. P starts explaining what they're going to do. A twelve hour fast, with blood draws at critical points because this information will tell them what's causing the constant flood of insulin in his body—the liver is not releasing sugar or there are tumors producing insulin. Distracted by his excellent first impression and the origami terry cloth bear perched next to him, I have confidence in asking a couple of questions......
I explained YET AGAIN, that if Rich goes more than 3 hours without eating, his blood sugar drops into the forties. When I found him Wednesday night it was 31, and at most that was a 10 hour fast. So, and here's my question, “how are you going to do a 12 hour fast and keep him from going into hypoglycemic shock?” Dr. P just stared at me with the too familiar expression that tells me I have just spoken a foreign language.
I decided to throw him a bone. And asked....”how often will you be checking his blood sugars,” because, AND I'm PROVIDING THIS INFORMATION AGAIN.... “he will not have any symptoms.”
Dr P rattled off the signs and symptoms of hypoglycemia AGAIN, and Rich and I both shook our heads with each one AGAIN. So I 'splained it again, Lucy. “He does not have any signs of hypoglycemia. He closes his eyes and goes to sleep and you won't know he's in trouble unless you check his sugars, OR he reaches the point of death-rattle breathing, gurgling, foaming at the mouth and unresponsive. “
You would think that after last year's sepsis sans symptoms, I could get them to understand that Rich doesn't have symptoms. I suspect this is because he doesn't want to inconvenience anyone so he just swallows it all down, which according to my scientific research, is why he developed pancreatic cancer in the first place.
Now Dr. P looks at me like not only I'm a speaking a foreign language but he'd really like me to just leave the room. Wait for it....
the Babble fish kicked in and Dr P decides to respond to me with “I can order 2 hour blood sugars, but that's not going to make the staff very happy.” The words were wrapped in just enough of a smile that I wasn't sure if he was failing at humor or calling me demanding and/or stupid.
I explain AGAIN how this has been working---”I'm not saying you have to test him every two hours, I'm just suggesting you might want to come in, check him, make sure he wakes up”, and if you pull your nursing assistants away from their iPhones, I think they can handle that task. Sorry. I can't forget the night Rich spent 45 minutes on a bedside commode and the nursing assistant came into his room texting.
But Dr P has a better idea. “How about you stay the night and check him every two hours.” I swear to god it sounded like an innocent suggestion but my head wanted to explode. I smiled sweetly and explained that “I've been doing the two hour gig non-stop since Wednesday night, so I'd sort of like to get some sleep.” Because when I get the bill for this trip, I'm going to be a little pissed that it's not discounted for my services.
My next question is “You're going to put a hep-lock in, right?” (That's an IV access that's waiting and ready if needed) Again someone looking at my two heads. I splain it for him, Lucy..... “When he crashes during this 12 hour fast, I'm just thinking you might want that IV access quickly, and I'm just letting you know he's a very difficult stick” He nods and writes on the chart, which could be a hep-lock order OR “wife is pain in the ass.”
We've pretty much covered everything to the Doctor's satisfaction. Rich is exhausted, I'm exhausted, and repeating a thing don't make it better so I'm ready to go home and Rich wants to sleep. We are now 2 hours 45 minutes from last food consumption. Since I didn't think to bring my video camera, I don't need to stick around and watch this parade, and there's going to be a huge bill for someone else to clean up the elephant poop, so....I'm good. It's 11:30, I'm leaving. I warned you people. In triplicate.
Around 3 pm the phone rings. I cannot explain what a bone jarring sound that is when you're half asleep and part of your brain is programmed to be ready for a call from the hospital.
It was Rich. He sounded drunk, which meant he could only do a half-assed job of telling me what was going on.
“They were running around like crazy, Pupshn. They kept running in and out of my room and giving me shots. They said I can't stay here. They're moving me to intensive care. ...I don't know what they're doing....” Click.
Geez. Sorry I missed that. The Elephant pooped and I wasn't there to see it.
The only reason I didn't call the hospital is because I'm thinking they really don't need any distractions right now. An hour later I get a call from his nurse to let me know that he's being moved to ICU because they don't have enough staff to do two hour checks. Right now I cannot even comment on that because I can't get past the 72 LPN's who lost their jobs. Neither can I get past the fact that I warned these people how it was going to go down, so how did you not know at admission that you couldn't handle two hour checks?!?!?!
Another hour later and Rich calls me to tell me where he is and what happened according to what he was told because he doesn't remember SHIT about it. He sounds good. Because he's been eating. So the bad news is, he has to eat the hospital food anyway. Update goes like this.... the doctor's now have no idea what they're going to do because they couldn't collect the fasting data they needed. They want to know if this problem is the result of the liver not releasing glucose, or tumors starting to produce insulin, and that requires 12 hour fasting bloodwork. And they seemed shocked that their plan didn't work. It was a good plan!
Well, here's a plan. I call it “What the Fuck?!?!?” Either the liver isn't working or tumors are producing insulin. Either way, I don't care. FIX IT! If you can put a goddamned pump in someone to release insulin as needed, why can't you insert a pump to release a steady flow of dextrose as needed?
Whatever, nobody's listening to me anyway.
A definition of insanity is repeating a behavior with the expectation of a different outcome. Doesn't look good for me, now does it?
Last night, as we're bracing ourselves for the return to Stupidville, I asked Rich if he remembered anything from Wednesday night. Mainly I wanted to know if he'd had any awareness, fear, pain or discomfort. No to all. Shit. That is information I should not have been given.
In hindsight, I've been asking myself all evening if I did the right thing Wednesday night. I'll admit it. For a split second before calling 911, I thought of crawling into bed with him and just holding him until it was over. It was barely a complete thought, not even recognizable until after the fact. In remembering that nano-second I realize I didn't call 911 for Rich. I called for me. Because I'm not ready to be here without him.
Thursday, November 10, 2011
"repeating a thing doesn't make it better"
“How long has he been like this?”
I don't know, I got home from work and found him like this.
I worked late today, because my work has been piling up because Oct 1st Medicaid changed their formulary so they're rejecting 80% of the prescriptions the doctor writes and patients need their meds, and yada, yada, yada....
I have had my ass chewed by patients this week like you can not imagine because I'm not jumping through hoops fast enough or with the correct landing and it's just been unbelievable.
Three weeks ago I started my game plan to get Rich to call the doctor, any doctor, because he's not feeling well, and at the result of my gawd-damned bitching and demanding he takes his blood sugar and it is WAY too low. Repeatedly. For three weeks, results all over the place, So my campaign begins and carries on.
As per usual, I get ready to leave work at 18 :30 and call to let him know. No answer. Okay, so maybe he's in the potty, or maybe on his phone.
Fifteen minutes into my 45 minute commute I have a vision of how I will find him. Then I struggle mightily to reject this negative energy, focus on the positive; all while the vision of him is in my head.
I pull into the driveway and the house is DARK.
I walk into the kitchen and the entire downstairs is exactly as I left it at 07:00. Seriously, you know that feeling and it's god damned creepy. I dropped my bags and ran up the stairs. He was lying on the bed, a god-awful noise coming from him almost like snoring but only if it were coming from a daemon in the depths of Hell. His eyes were partially opened, rolled back in their sockets. There was foamy drool coming out of his mouth. I fucking panicked. It was the god damned vision I had fought during my 45 minute commute.
I did everything I knew to rouse him and failed. All I had was a freakin glucose tab on the beside so I placed it under his tongue and tried to hold it in place while I took his blood sugar. It was 31.
I tried desperately not to panic and held onto the glucose tab under his tongue while I called 911.
Time stood still. I'm rubbing that glucose tab under his tongue and begging him to hold on for me, and where is the god-damned squad, and how long has he been like this if the house looks like I left it twelve hours ago, and please don't leave me, and where is the god-damned squad and flashbacks to our last tour through the ER, and should I just lock the doors and crawl into bed beside him till he's gone, and can I go too, and where is the squad, and holy shit I've been here before, but not like this, and Please, please, please don't leave me, Richard, I love you.
The squad arrives and I can barely talk. As it turns out, it didn't matter. Because anything I said, I had to say in triplicate. So that could ask me to repeat it..... in triplicate.
By the time the squad arrives, I'm explaining the scene for the third time.
“I got home from work and found him unresponsive, struggled breathing, foaming at the mouth and his blood sugar is 91.”
For the third time—Is he diabetic?
NO. Not diabetic, not on insulin, no new meds.... I repeat three times his meds. I had to spell “flecainide” three times. They want to know why I checked his glucose. Because he exhibited signs of hypoglycemia?!?!?!?!? So again they ask me how long he's been like this and what symptoms he's had over the past few days.
So okay, I'm going to spare all of YOU what I was not spared of. I calmly explained to them the medical records you can recall from this blog. I shared this info in triplicate. They repeated their questions in triplicate. I answered in triplicate.
As they are trying to start an IV, they are getting increasingly FREAKED by the fact that his pulse ox is 100%, his BP is 142/74, and his pulse is 76. He is still unresponsive and drooling foam.
If they were to ask me again if he had symptoms, a fever, or how long he had been like this, I would have grabbed the pen from his hand and shoved it into my jugular vein.
Luckilu the dextrose IV kicked in.
Within 4 minutes of the glucose drip, Rich started to respond. Ten Minutes later Rich is holding court and everyone is happy that they saved the day and Rich is making new best friends and I'm standing in the dark quarter of the room holding back sobs while one of the EMS berates me for attempting a glucose tab and one of the voices is screaming “Yeah—like possible choking was the priority here,you sorry ass fuck..”
And while the EMS squad is congratulating themselves and directing me towards producing a peanut butter sandwich post haste, I suddenly find myself in a close encounter with hell. I have been here before. I know this place. I know the frustration, hopelessness, and sheer pain of this place.
EMS demanded that we sign papers that “we” were refusing transport. I said. “Have him sign.” Rich was happy to do so, and made quite a grand show of it—per the EMS.
They left, and I could not stop crying. I kept hearing them ask the same questions and me giving the same answers, and them repeating the questions like my answers were unacceptable. I relived my recent days of nagging Rich to call the doctor because he wasn't feeling well and his blood sugars were running low, and feeling like shit because all I do anymore is nag. I felt flashbacks to the last time we called the squad that drove us to the ER where I signed papers, and then 27 days of sitting at his deathbed because he wouldn't call the doctor after I begged him to call the doctor.
So I looked at him tonight after the dust settled and he was all comfy and chatty and glad to be alive. And I asked him gently....”what the fuck do you want from me?” He had no idea what I was talking about. So I explained.
“I can't go to work anymore, because I need to be here to take care of you. That means we will lose our insurance, and then we will lose everything. Or I could hire a babysitter for you to make sure you do want needs done, in which case I'll be working to work; or I could just put you in a nursing home. What do I need to do???? What do you want? Because I'm at the end of my fucking rope.”
He just looked at me.
I don't know what I have to say or how I have to say it to make him hear me.
I sat on the edge of the bed beside him and cried. He stared at me while I cried. I begged him to tell me what he wants me to do. I screamed in the empty space between us ---I love you, I believe in you. PLEASE help me know what to do. He stared at me a moment, shrugged, and looked away. I told him I believe he will beat this. He nodded. I begged him to tell me my place in this. He shrugged and looked away.
So I came downstairs and sat on the couch and cried through two cups of tea and three handkerchiefs.
I'm just a bit tired now. A wee bit off my game. Not quite sure what my next step should be. Can't stop crying and feel like I have gallons to go....
I don't know, I got home from work and found him like this.
I worked late today, because my work has been piling up because Oct 1st Medicaid changed their formulary so they're rejecting 80% of the prescriptions the doctor writes and patients need their meds, and yada, yada, yada....
I have had my ass chewed by patients this week like you can not imagine because I'm not jumping through hoops fast enough or with the correct landing and it's just been unbelievable.
Three weeks ago I started my game plan to get Rich to call the doctor, any doctor, because he's not feeling well, and at the result of my gawd-damned bitching and demanding he takes his blood sugar and it is WAY too low. Repeatedly. For three weeks, results all over the place, So my campaign begins and carries on.
As per usual, I get ready to leave work at 18 :30 and call to let him know. No answer. Okay, so maybe he's in the potty, or maybe on his phone.
Fifteen minutes into my 45 minute commute I have a vision of how I will find him. Then I struggle mightily to reject this negative energy, focus on the positive; all while the vision of him is in my head.
I pull into the driveway and the house is DARK.
I walk into the kitchen and the entire downstairs is exactly as I left it at 07:00. Seriously, you know that feeling and it's god damned creepy. I dropped my bags and ran up the stairs. He was lying on the bed, a god-awful noise coming from him almost like snoring but only if it were coming from a daemon in the depths of Hell. His eyes were partially opened, rolled back in their sockets. There was foamy drool coming out of his mouth. I fucking panicked. It was the god damned vision I had fought during my 45 minute commute.
I did everything I knew to rouse him and failed. All I had was a freakin glucose tab on the beside so I placed it under his tongue and tried to hold it in place while I took his blood sugar. It was 31.
I tried desperately not to panic and held onto the glucose tab under his tongue while I called 911.
Time stood still. I'm rubbing that glucose tab under his tongue and begging him to hold on for me, and where is the god-damned squad, and how long has he been like this if the house looks like I left it twelve hours ago, and please don't leave me, and where is the god-damned squad and flashbacks to our last tour through the ER, and should I just lock the doors and crawl into bed beside him till he's gone, and can I go too, and where is the squad, and holy shit I've been here before, but not like this, and Please, please, please don't leave me, Richard, I love you.
The squad arrives and I can barely talk. As it turns out, it didn't matter. Because anything I said, I had to say in triplicate. So that could ask me to repeat it..... in triplicate.
By the time the squad arrives, I'm explaining the scene for the third time.
“I got home from work and found him unresponsive, struggled breathing, foaming at the mouth and his blood sugar is 91.”
For the third time—Is he diabetic?
NO. Not diabetic, not on insulin, no new meds.... I repeat three times his meds. I had to spell “flecainide” three times. They want to know why I checked his glucose. Because he exhibited signs of hypoglycemia?!?!?!?!? So again they ask me how long he's been like this and what symptoms he's had over the past few days.
So okay, I'm going to spare all of YOU what I was not spared of. I calmly explained to them the medical records you can recall from this blog. I shared this info in triplicate. They repeated their questions in triplicate. I answered in triplicate.
As they are trying to start an IV, they are getting increasingly FREAKED by the fact that his pulse ox is 100%, his BP is 142/74, and his pulse is 76. He is still unresponsive and drooling foam.
If they were to ask me again if he had symptoms, a fever, or how long he had been like this, I would have grabbed the pen from his hand and shoved it into my jugular vein.
Luckilu the dextrose IV kicked in.
Within 4 minutes of the glucose drip, Rich started to respond. Ten Minutes later Rich is holding court and everyone is happy that they saved the day and Rich is making new best friends and I'm standing in the dark quarter of the room holding back sobs while one of the EMS berates me for attempting a glucose tab and one of the voices is screaming “Yeah—like possible choking was the priority here,you sorry ass fuck..”
And while the EMS squad is congratulating themselves and directing me towards producing a peanut butter sandwich post haste, I suddenly find myself in a close encounter with hell. I have been here before. I know this place. I know the frustration, hopelessness, and sheer pain of this place.
EMS demanded that we sign papers that “we” were refusing transport. I said. “Have him sign.” Rich was happy to do so, and made quite a grand show of it—per the EMS.
They left, and I could not stop crying. I kept hearing them ask the same questions and me giving the same answers, and them repeating the questions like my answers were unacceptable. I relived my recent days of nagging Rich to call the doctor because he wasn't feeling well and his blood sugars were running low, and feeling like shit because all I do anymore is nag. I felt flashbacks to the last time we called the squad that drove us to the ER where I signed papers, and then 27 days of sitting at his deathbed because he wouldn't call the doctor after I begged him to call the doctor.
So I looked at him tonight after the dust settled and he was all comfy and chatty and glad to be alive. And I asked him gently....”what the fuck do you want from me?” He had no idea what I was talking about. So I explained.
“I can't go to work anymore, because I need to be here to take care of you. That means we will lose our insurance, and then we will lose everything. Or I could hire a babysitter for you to make sure you do want needs done, in which case I'll be working to work; or I could just put you in a nursing home. What do I need to do???? What do you want? Because I'm at the end of my fucking rope.”
He just looked at me.
I don't know what I have to say or how I have to say it to make him hear me.
I sat on the edge of the bed beside him and cried. He stared at me while I cried. I begged him to tell me what he wants me to do. I screamed in the empty space between us ---I love you, I believe in you. PLEASE help me know what to do. He stared at me a moment, shrugged, and looked away. I told him I believe he will beat this. He nodded. I begged him to tell me my place in this. He shrugged and looked away.
So I came downstairs and sat on the couch and cried through two cups of tea and three handkerchiefs.
I'm just a bit tired now. A wee bit off my game. Not quite sure what my next step should be. Can't stop crying and feel like I have gallons to go....
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