On Wednesday afternoon, Bob was discharged from the hospital. That was the first time that I saw his primary care doctor at the hospital (except once, I recognized his back, going down the hall). The first words out of the doctor's mouth were, "Let's get him home, before he catches something."
Nice to know, even the doctors think hospitals are nothing but a bed of germs....
So, the primary care doctor leaves to fill out the discharge paperwork. And the nurse comes in to take out Bob's IV's. Then she leaves. Then she comes back with the paperwork. And I say, "Um, you still need to take out the Foley catheter."
She tells me that they do not have an order to discontinue the Foley catheter. That Bob is being discharged home with that tube stuck up his penis!
I'm thinking, What the f--?!
I say, well, this must be a mistake. So the nurse goes to get the doctor, but the doctor, like Elvis, has already left the building. So, she calls him on the phone.
When she returns to Bob's room, she says that the doctor told her that Bob was, in fact, being discharged with a Foley catheter. This, because, he has bladder retention. The doctor also says that I should take Bob to see a urologist ASAP. That Bob needs to have tests run for bladder retention and also, the urologist should scope the bladder to make sure there isn't an obstruction.
I tell you, I nearly hit the roof.
I mean, this is not some doctor/stranger----this is Bob's primary care doctor who should know better. Bob already has had neurogenic bladder testing and the urologist already knows that Bob has bladder retention and prescribed intermittent catheterization (which I already do) and on top of that, we were just at the urologist's office last week and Bob's bladder was "scoped" for obstructions at that time.
I tell the nurse all of this, but she refuses to call the doctor back. She insists that Bob has "serious bladder retention" and it would be "dangerous" to take the thing out. And the only one authorized to remove the Foley catheter, she says, is a urologist and I must take Bob to see one.
Lord almighty. I was ready to strangle that primary care doctor. And that nurse.
For one thing, I can't believe a doctor would leave an order like this, without speaking to me and Bob first. I mean, really, would any doctor discharge a patient with a indwelling catheter and not explain/tell them about it and discuss it before discharge? What about personal choice in this matter?This is just another example of people, especially so called medical professionals, treating Bob as if he was less than human. That honestly just pisses me off. Bob has aphasia, but he is not an idiot.
And another thing. Does this doctor realize how much this is going to cost us? A completely unnecessary doctor's appointment with a $40.00 co-pay and the cost of wheelchair transport. And for what? Just to have the urologist yank the thing out. Because we were just there last week. And Bob had a full bladder exam and the urologist changed Bob's overactive bladder med and gave me a script for external condom catheters. We left that doctor's office with poor Bob soaked with urine, his wheelchair soaked with urine, because they couldn't get Bob up on the table and did the "scope" exam in his wheelchair. I had a mess on my hands when we got home. And I certainly wasn't looking forward to going through that again... I mean, give me a break.
To say the least, I was pretty livid when we left the hospital. The first thing I did when we arrived home, after I got Bob situated and comfortable, was get on the computer and google "how to remove a Foley catheter". Because, I tell you, this is one caregiver who is not afraid to take matters into her own hands.
It didn't look too hard. Except you need a special syringe to draw the fluid out of the balloon in his bladder. So, I called a friend, who is a nurse. And she said that she could stop by on Friday and yank the thing out for us.
She also said that I may want to think twice about taking it out. Because it's convenient. Especially for the caregiver.
On Thursday, I took Bob to see his Pain Management doctor. We went with that Foley catheter connected to a leg bag. And it was convenient. First time, ever, we went out and didn't spend half the time in the men's room.... but that's why I asked for the external "condom catheter" prescription from the urologist.
We had gone to see the urologist the week before because Bob's overactive bladder symptoms have changed. Used to be, he had "urge incontinence" meaning he felt like he had to pee and couldn't. Now, it seems, he's peeing every freaking 15 minutes. I kid you not. And that is driving me nuts. Especially when we go out.
After that appointment, the urologist sent a script for condom catheters to a home health agency. Who sent a nurse to our house to "teach" me how to use them. More on that, later....
Anyhow, my friend, who is a nurse, arrived on Friday and took the blasted Foley catheter out. And Bob peed just fine, 15 minutes later. And he continues to pee, every 15 minutes....
But I am glad to have him home. First time, I got a good night's sleep in a week.
A couple of people had told me to take "advantage" of Bob's time in the hospital and get myself some well deserved "respite" from 24/7 caregiving. But I tell you, I really missed him when he wasn't here. Weird that.
We see the primary care doctor this week for a follow-up. And you can bet, he's going to get a piece of my mind.
Monday, February 18, 2013
Wednesday, February 13, 2013
And Then...
Yesterday, I got up at 4:00 a.m. I say "got up" as that's when I physically got out of bed. I had been awake since 3:00 a.m. I had gone to bed at midnight. So that's how little sleep I had gotten. Mostly, I laid in the bed thinking...
On Monday, I had a long discussion with the vascular surgeon, who told me that he had never seen a polyp the size of the polyp on Bob's gallbladder. The thing, he said, was nearly 2 inches long. Shaped like a walnut. There was a big chance that such an enormous polyp would be cancerous, and even if it wasn't now cancerous, it certainly had the potential become malignant and needed to be taken out. He did tell me that gallbladder cancer was "extremely rare", however, when it occurred it was "usually fatal". We also discussed the warfarin situation, and he told me he would switch Bob over to a heparin drip which would keep Bob's blood thin until the surgery and be restarted after surgery. This way, there would only be a 4 hour window that Bob would be unprotected. We talked too about the difference between doing the surgery with a scope or opening Bob up. The scope would be easier, but might not be impossible because of old scar tissue on Bob's stomach. Opening him up would take longer and have more risk factors. Before commencing with the surgery, he would be running some tests.
Monday night, I had left the hospital at 9:30 p.m. when they began preparing to take Bob down for a CAT scan. I left right after a discussion with a curly blonde haired doctor with a heavy foreign accent and an unpronounceable name. The vascular surgeon had ordered the CAT plus a bunch of blood work plus another test called something or other, which sounded like "hyper-supersonic-scan" and this scan, the nurse had explained to me, was a sort of hi-tech super-ultrasound and would look at all of Bob's internal organs. The doctor, the nurse said, were searching for anything that might complicate the surgery. They were looking to see if any bile ducts or arteries near the gallbladder were occluded. They were looking for other "masses" on any nearby organs. They were also reading for "chemical levels" coming from each of Bob's organs. In order to do this test, they had to discontinue all Bob's narcotic pain medications for eight hours.
And this is why I was talking to the unpronounceable named doctor with a heavy foreign accent and curly blonde hair. Because I did not want them to take Bob off his pain medication. Especially cold turkey. Especially for eight hours. I mean, Bob has some heavy duty pain meds, i.e.: Fentynal and oxycodone. And knocking those off, just like that, were going to cause some serious drug withdrawal.
Dr. Curly Blonde Hair, however, assured me that they could give Bob morphine, on a drip, and that would keep his pain in check plus stop any withdrawal from happening. That's when I left the hospital, went home and laid in bed--my mind churning about things like masses on nearby organs (cancer!) and occluded arteries (stroke!). These thoughts interrupted with feverent prayers for Bob's healing. Funny how I revert back to my Catholic upbringing in times of crisis.
So back to yesterday, which was Tuesday, I arrived around 6:00 a.m. to find Bob, drenched in sweat, screaming in pain and trying like heck to pee. When Bob saw me enter the room, he glared at me and pointed an accusing finger as if I were the cause of all this distress. I immediately asked the nurse, "where's the morphine drip?" And was told that another doctor nixed the morphine and Bob had been stripped of his Fentynal patches and oxycodone at 2:00 a.m. He was scheduled for the hyper-sonic-thingy test at 7:30 a.m. and she assured me, she had Fentynal patches on standby and would put them on immediately when he arrived back in the room.
It was a long wait for 7:30 a.m. With Bob screaming and trying to pee. When Bob returned, he was in even worse shape. His whole hospital gown was soaked with sweat, as was his hair. He was red-faced and trembling and shaking. His legs kicking out, arms flopping. And still trying like heck to pee. I grabbed the nurse but the Fentynal patches were nowhere to be found. She checked the computer and found the order was not due to be filled until noon. I asked if they could cath Bob so he could pee, but she needed a "doctor's order" for that. So that sent me on a mad and fruitless dash in search of a doctor. Who finally arrived around 10:30 and finally ordered patches and morphine, which arrived around 11:00 a.m. And, at my request, the doctor put in an order for a foley catheter, which was inserted into Bob around noon. And he immediately peed 1400 mls of urine. No kidding.
With pain meds and peeing, Bob fell asleep. Nothing much happened, except Bob got moved to a different room on the surgery wing. Then, I got, first, word that the CAT scan showed Bob's lower lung lobes were collasped and an antibiotic was being ordered. Later, word came down that the hyper-sonic-thingy test results were normal. Then, word that the vascular surgeon was ordering another ultrasound.
At around 6:30 p.m., the vascular doctor arrived with test results in hand. He showed me the results of the new ultrasound that he had run on Bob's gallbladder. The results read, in part, :
On Monday, I had a long discussion with the vascular surgeon, who told me that he had never seen a polyp the size of the polyp on Bob's gallbladder. The thing, he said, was nearly 2 inches long. Shaped like a walnut. There was a big chance that such an enormous polyp would be cancerous, and even if it wasn't now cancerous, it certainly had the potential become malignant and needed to be taken out. He did tell me that gallbladder cancer was "extremely rare", however, when it occurred it was "usually fatal". We also discussed the warfarin situation, and he told me he would switch Bob over to a heparin drip which would keep Bob's blood thin until the surgery and be restarted after surgery. This way, there would only be a 4 hour window that Bob would be unprotected. We talked too about the difference between doing the surgery with a scope or opening Bob up. The scope would be easier, but might not be impossible because of old scar tissue on Bob's stomach. Opening him up would take longer and have more risk factors. Before commencing with the surgery, he would be running some tests.
Monday night, I had left the hospital at 9:30 p.m. when they began preparing to take Bob down for a CAT scan. I left right after a discussion with a curly blonde haired doctor with a heavy foreign accent and an unpronounceable name. The vascular surgeon had ordered the CAT plus a bunch of blood work plus another test called something or other, which sounded like "hyper-supersonic-scan" and this scan, the nurse had explained to me, was a sort of hi-tech super-ultrasound and would look at all of Bob's internal organs. The doctor, the nurse said, were searching for anything that might complicate the surgery. They were looking to see if any bile ducts or arteries near the gallbladder were occluded. They were looking for other "masses" on any nearby organs. They were also reading for "chemical levels" coming from each of Bob's organs. In order to do this test, they had to discontinue all Bob's narcotic pain medications for eight hours.
And this is why I was talking to the unpronounceable named doctor with a heavy foreign accent and curly blonde hair. Because I did not want them to take Bob off his pain medication. Especially cold turkey. Especially for eight hours. I mean, Bob has some heavy duty pain meds, i.e.: Fentynal and oxycodone. And knocking those off, just like that, were going to cause some serious drug withdrawal.
Dr. Curly Blonde Hair, however, assured me that they could give Bob morphine, on a drip, and that would keep his pain in check plus stop any withdrawal from happening. That's when I left the hospital, went home and laid in bed--my mind churning about things like masses on nearby organs (cancer!) and occluded arteries (stroke!). These thoughts interrupted with feverent prayers for Bob's healing. Funny how I revert back to my Catholic upbringing in times of crisis.
So back to yesterday, which was Tuesday, I arrived around 6:00 a.m. to find Bob, drenched in sweat, screaming in pain and trying like heck to pee. When Bob saw me enter the room, he glared at me and pointed an accusing finger as if I were the cause of all this distress. I immediately asked the nurse, "where's the morphine drip?" And was told that another doctor nixed the morphine and Bob had been stripped of his Fentynal patches and oxycodone at 2:00 a.m. He was scheduled for the hyper-sonic-thingy test at 7:30 a.m. and she assured me, she had Fentynal patches on standby and would put them on immediately when he arrived back in the room.
It was a long wait for 7:30 a.m. With Bob screaming and trying to pee. When Bob returned, he was in even worse shape. His whole hospital gown was soaked with sweat, as was his hair. He was red-faced and trembling and shaking. His legs kicking out, arms flopping. And still trying like heck to pee. I grabbed the nurse but the Fentynal patches were nowhere to be found. She checked the computer and found the order was not due to be filled until noon. I asked if they could cath Bob so he could pee, but she needed a "doctor's order" for that. So that sent me on a mad and fruitless dash in search of a doctor. Who finally arrived around 10:30 and finally ordered patches and morphine, which arrived around 11:00 a.m. And, at my request, the doctor put in an order for a foley catheter, which was inserted into Bob around noon. And he immediately peed 1400 mls of urine. No kidding.
With pain meds and peeing, Bob fell asleep. Nothing much happened, except Bob got moved to a different room on the surgery wing. Then, I got, first, word that the CAT scan showed Bob's lower lung lobes were collasped and an antibiotic was being ordered. Later, word came down that the hyper-sonic-thingy test results were normal. Then, word that the vascular surgeon was ordering another ultrasound.
At around 6:30 p.m., the vascular doctor arrived with test results in hand. He showed me the results of the new ultrasound that he had run on Bob's gallbladder. The results read, in part, :
one unremarkable 3 mm polyp... no sign of abnormality... no inflammation...
plus several tiny barely visible polyps, the type normally seen in a patient of this age....
And I said, WHAT HAPPENED TO THE GIANT POLYP?
And he said, Well. Either the first ultrasound was read by a complete idiot who maybe mistook a shadow for a gigantic polyp. Or the thing magically disappeared within 5 days.
Bottom line: No need for surgery. No more cancer scare. Bob does has lung pleurisy. This, I'm told, will easily clear up with an antibiotic.
Big sigh of relief here. Jeepers. What they put us through.
And a big thank you to all of you for your comments, support, prayers, white healing light, and good intentions and karma. That doctor did say, the giant polyp may have magically disappeared.... hmmm...
Of course, it could just have been an idiot misreading an ultrasound.
I am off to the hospital. Not sure when they will discharge Bob. Right now, he is getting an IV antibiotic.
Monday, February 11, 2013
Update: Bob in the Hospital
Took Bob to the ER today. He was in great pain. They admitted him for testing and possible gallbladder surgery tomorrow. The "polyp" on his gallbladder is the size of a "walnut", which is huge for such things. Big cancer scare, there. Met with the surgeon, who seems cool and knowledgeable and realizes the risks of another stroke.
It's been a long darn day.... just got home. Me? I'm a nervous wreck.
Prayers, everyone.
Thanks.
It's been a long darn day.... just got home. Me? I'm a nervous wreck.
Prayers, everyone.
Thanks.
Sunday, February 10, 2013
Something new to worry about....
For the past couple of weeks, Bob has been complaining of pain in his right side, under his rib cage. On a few occasions, the pain seemed so great that I nearly rushed him to ER--but he refused to go. Finally, I got him to see his neurologist who determined the location of the pain was Bob's liver and ordered an ultrasound, blood work, and an x-ray. Which we did on Wednesday.
On Thursday, there was a message from the primary care doctor's office stating that they were referring Bob to a vascular surgeon. That's all the message said, and it was after 5:00 p.m. when we got home that day. Why do doctor's offices do this? Leave a spooky message with no explanation.
So I spent a night worrying.... thinking all sorts of dread thoughts. Another clogged artery? One going to the heart? and, oh god, what if he has a heart attack? I tell you, by morning, I had Bob dead and cremated in my mind.... so I was actually relieved when I called the doctor's office in the a.m. and was told that Bob had "gallbladder polyps".
Which didn't sound bad at all.
Until I googled that term.
And I found out there's a chance these things could be cancerous.
And the normal treatment is removal of the gallbladder. Which would mean another surgery. The prospect of which scares the living crap out of me. Because surgery requires going off the warfarin and going off the warfarin puts him at high risk of another stroke.
I couldn't get an appointment with the vascular surgeon until the end of the month. So I get to worry for a few more weeks until we consult with the doctor.
Tuesday, February 5, 2013
Connecting The Dots
Last week, we went to see Dr. P., Bob's endocrinologist. The appointment went like this:
Dr. P. (enters the room): Well, hello Robert! How are you, today?
Bob: I'm mighty fine. How are you?
Dr. P: Not so good, these hemroids are killing me. You won't mind if I stand up while I talk to you?
Bob: No.
Dr. P: So who are you routing for? The east coast or west coast?
Me: thinking: huh?
Bob: East coast.
Dr. P: So, you're a Raven's fan.
Me: thinking: Ravens? (Sorry, Bob and I don't watch TV, don't follow sports at all.)
Bob: (long pause).... Oh! Football!..... um, um,.....Green Bay!
Dr. P. (looks at me): Green Bay?
Me: He's thinking of the Green Bay Packers. We're from Wisconsin, originally.
Dr. P.: Wisconsin, eh? Boy, that's way up north. Cold up there, I bet.
Bob: Freezing!
Dr. P.: So, you're a big football fan?
Bob: No way!
Dr. P.: (laughs) I don't like football that much either. (opens the chart) Well, let's see here. Last time you were in, your arm was really bothering you. How's that arm doing today?
Bob: Better.
Dr. P.: Good! Anything new you wanted to discuss with me?
Bob: No.
Dr. P. (sits down then stands back up): Oh damn these hemroids! I can't even sit down today. And don't even ask about going to the bathroom. God, a person doesn't appreciate how good it is to be healthy, until you're not.
Bob: Exactly.
Dr. P.: Well, all the blood work looks good. (closes the chart) So I'll see you again in six months, OK?
Bob: Okey dokey.
Dr. P.: Good to see you, Robert. (shakes Bob's hand)
Bob: Good to see you, too.
I tell you, I was completely floored. Because that was the first time we've gone to a doctor's office and Bob did all the talking! And he was able to follow the conversation even when the doctor jumped from subject to subject. Wow.
I do believe his brain is finally connecting the dots.
Dr. P. (enters the room): Well, hello Robert! How are you, today?
Bob: I'm mighty fine. How are you?
Dr. P: Not so good, these hemroids are killing me. You won't mind if I stand up while I talk to you?
Bob: No.
Dr. P: So who are you routing for? The east coast or west coast?
Me: thinking: huh?
Bob: East coast.
Dr. P: So, you're a Raven's fan.
Me: thinking: Ravens? (Sorry, Bob and I don't watch TV, don't follow sports at all.)
Bob: (long pause).... Oh! Football!..... um, um,.....Green Bay!
Dr. P. (looks at me): Green Bay?
Me: He's thinking of the Green Bay Packers. We're from Wisconsin, originally.
Dr. P.: Wisconsin, eh? Boy, that's way up north. Cold up there, I bet.
Bob: Freezing!
Dr. P.: So, you're a big football fan?
Bob: No way!
Dr. P.: (laughs) I don't like football that much either. (opens the chart) Well, let's see here. Last time you were in, your arm was really bothering you. How's that arm doing today?
Bob: Better.
Dr. P.: Good! Anything new you wanted to discuss with me?
Bob: No.
Dr. P. (sits down then stands back up): Oh damn these hemroids! I can't even sit down today. And don't even ask about going to the bathroom. God, a person doesn't appreciate how good it is to be healthy, until you're not.
Bob: Exactly.
Dr. P.: Well, all the blood work looks good. (closes the chart) So I'll see you again in six months, OK?
Bob: Okey dokey.
Dr. P.: Good to see you, Robert. (shakes Bob's hand)
Bob: Good to see you, too.
I tell you, I was completely floored. Because that was the first time we've gone to a doctor's office and Bob did all the talking! And he was able to follow the conversation even when the doctor jumped from subject to subject. Wow.
I do believe his brain is finally connecting the dots.
Sunday, February 3, 2013
Legal Update
So, the good news last week from our attorney's office was that they believe (and believe here is the key word) that our case is "indefensible".
This because our attorney has had an initial consult with the hospital's attorney and that's the impression he was left with after talking with her. He believes this so strongly, that he has his staff in a mad scramble to collect all the data and calculate all the numbers we will need to proceed directly to settlement hearings.
This past week, I have spent two afternoons filling out questionnaires sent by the rehabilitation consultant hired by our attorney. The first one was a six page "Upper Extremity Assessment" on Bob's ability to move his upper extremities both pre- and post-stroke. The second, "A Client Information Report", dealt how our lives and our relationship have changed post-stroke. I tell you, this second questionnaire left me in tears.
In addition to that, I spent over 2 hours on the phone being interviewed by the "client assessment coordinator" who is working up the numbers for Bob's "Life Plan", i.e. how much his care will cost for the rest of his life...
Plus, I spent time figuring out my "daily caregiver duties" and copying and e-mailing things like our utility bills. Believe me, I've been a busy gal.
"Indefensible." That was our attorney's term.
Meaning, he thinks that the hospital doesn't have a defense and is going admit they screwed up.
Good news, indeed. If he's right.
Of course, they still have their 90 days to officially respond.
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