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Monday, July 29, 2013

The PT War Zone

The Battle: Part 1

So it starts with the therapist, who calls me on Wednesday to set up a time for Bob's first physical therapy session. She tells me she can come tomorrow (Thursday) but her schedule is full that day and she wouldn't be able to spend "much time" with him, or she could come on Friday when she'd have "more time" to dedicate to him, so I tell her to come on Friday. She says that she'll be here between 1-2 p.m.

Friday rolls around and I get Bob ready and pumped for his first PT session and at 1:30 the therapist calls and tells me that she can't remember what time she's supposed to here.... grrr... So I tell her that she's supposed to be here, um, right about now, between 1-2. And she says that she'll have to make it between 2-3, but "closer to 2" and I say, OK and hang up the phone.

Three o'clock rolls around and still no therapist. I have to take Boomer out to take a leak, and I'm thinking, if she doesn't show up by the time we get back into the house, I'm going to call her and cancel this appointment because, truth be told, Bob and I are both tired of waiting. I open the front door, with the dog on a leash, and there's the therapist walking up to the house...

She comes in and takes Bob's blood pressure, then makes some notes in her file and asks a couple of questions, all of which takes about 10 minutes. Then she helps Bob do some leg lifts and a couple of neck stretching exercises and I leave the room. Next thing I know, she's holding out a form for me to sign and then off she goes. And I'm thinking, huh? That was fast. And I look at my watch and I swear, she had only been there about 30 minutes....

The more I think about this, the more steamed I am getting, because truthfully, what good is about 20 minutes worth of therapy? Not to mention waiting for two hours for twenty minutes of therapy.... Not to mention that she was going to spend "more time" with him on Friday.... And how much time would she have spent with him when her schedule was "full"?

On Saturday, I get the insurance "approval notice" for physical therapy which tells me that Bob is approved for "20 visits" but it doesn't tell me how long a visit should last. So I call the insurance company and ask them, just out of curiosity, how long is a visit for at-home PT? I mean, they're paying for it and they must be paying it based on hourly wage, right? But unfortunately the benefits representative has no clue how long a visit should last, though she does agree that 20 minutes of therapy doesn't seem near long enough. She advises me to call the agency on Monday and ask them.

The more I'm thinking of all of this, the more I think that I will call the agency on Monday and ask them how long a visit is supposed to last and also request a different therapist. Because I'm not so sure about this new PT...

At 8:00 p.m. on Saturday night, the phone rings. And it's the PT. She leaves a message stating that she wants to schedule an appointment for Sunday. And I'm thinking, what? You call at 8:00 p.m. and want to schedule something for tomorrow? As if I don't have life! Well, truth be told, I don't have a life, but that's not the point, as I would sort of like some advance notice so I can prepare. Besides, I'm still ticked that we waited for her for two hours and then she only spent 20 minutes working with Bob...

And I almost do not call her back. I think, forget it. I'll just call the agency on Monday. But then, I think, well, that would be kind of mean... and I should probably give her a chance to explain herself. But, by the same token, I do not want to be taken advantage of and I don't want to be kept waiting and I certainly want her to spend some time with him when she comes. So, I call her back. And I say, something to the effect of, "gee, you know, you really seem very busy and perhaps you just have more clients than you can handle at this time, so I'm thinking about requesting another therapist, one who can spend more time with my husband..." and she, of course, freaks out.

And she apologizes. And she asks for a "second chance". So we make an appointment for Sunday, between 1-2 p.m.

On Sunday, she arrives right on time and stays an entire hour. And looks like I won this particular battle. Until:


The Battle: Part 2

Which is Bob. Yes, Bob. Who flat out refuses to cooperate with the therapist. And I mean, flat out. She tells him to lift his leg, he says, "No!"

She lifts his leg, he screams, "Hurts!"

She wants him to get into the wheelchair, he refuses to budge.

I coax, beg, plead with him to cooperate and he glares at me. And I mean really glares. One of those if looks could kill glares. Though I do manage to get him into the wheelchair and I do manage to get him to cooperate with the bed exercises, but it's not without constant grumbling, complaining and giving me the evil eye....

Then the PT leaves and I shut the door only to hear Bob yell at me, "YOU F**KER!"

I tell you, I can't believe it. I really can't believe it. So I walk out of the room, because I can't believe it. I mean, what's gotten into him? And how am I supposed to respond to that? And this, after first having to fight with the therapist to get her here and on time and cooperating, and now I have to fight with Bob? And am I the only one who wants this darn therapy, anway???

Then I realize it's time to drop the bomb on this particular war zone. I'm talking about the dreaded N-Word. At The Pink House on the Corner, the dreaded N-Word is: Nursing Home.

So I go back into Bob's room and tell him, in so many words, that I am not going to continue to keep working my buns off taking care of him if he is not going to cooperate with the only thing I expect from him which is for him to do his therapy because I'm not going to sit around watching him get worse and worse, etc. etc. And I end this diatribe with DO YOU WANT TO END UP IN THE FREAKING NURSING HOME??!!!! BECAUSE, HONEY,  THAT IS WHERE YOU ARE HEADED IF YOU DON'T DO YOUR THERAPY!!!! AND I CAN START LOOKING AROUND FOR A NICE NURSING HOME THIS WEEK, IF THAT IS WHAT YOU WANT ME TO DO!!!

So bomb dropped.

Smoke clears.

Soldiers retreat.

And treaty signed. He promises to cooperate next time.

She's coming here tomorrow, between 2-3, and we'll see what happens....

Stay tuned.

Friday, July 26, 2013

PT, again

I hope I am not pushing this too fast, but Bob will have his first at-home physical therapy session today. He has been out of therapy since April and I can see that he is getting weaker and weaker. So when the neuro doc suggested in-home therapy after the botox treatments, I jumped on it.

Because really, Bob needs to start moving around. He hasn't done any exercises since dropping out of Outpatient Rehab. It's been over 3 months and most days he even refuses to get out of bed into the wheelchair. Plus he doesn't want a bed bath, doesn't want his hair washed, won't even shave unless we are going to a doctors' appointment and, of course, doesn't want to do his exercises.  And all of this really concerns me.

My thought had been once the botox sets in and after his foot healed, he would be ready to go.  Because, truthfully, his excuse has been that his foot and leg "hurts". Unfortunately, the botox has not set in, at least not that I can tell, and it's been 3 weeks since those injections. On top of that, his foot is still killing him (those darn little toes).

But we are starting "slow", really starting from scratch, back to Square One with a home care therapist and in-bed exercises. And we'll see how it goes...

Monday, July 22, 2013

Once Again, These Doctors are Trying to Kill Him...

I swear. You'd like to think you can trust a doctor, that when a doctor tells you to do xyz, that he knows what he's talking about. That a doctor is not just guessing and meanwhile putting your loved one in harms way....

Case in point, I'm talking about the heparin bridge. And three different doctors, doing it three different ways, which makes me wonder...

Now the "heparin bridge" is done when you have take someone off their blood thinner for surgery or another procedure (such as a needle stick procedure) that may cause bleeding, but you don't want to endanger them, i.e. cause another stroke, so you "bridge" the patient with a fast-acting blood thinner like heparin. Heparin is injected into the skin, enters the blood stream fast, it also leaves the blood stream fast, unlike warfarin which is a pill and takes forever to build up in the system and lingers there a long time. Therefore you can skip just one injection of heparin, have a smaller "window" of not-to-thin blood in order to perform the procedure and immediately put the patient back on heparin afterwards. In this way, you limit the danger of the blood clotting and causing another stroke to a small period of time. And for Bob, this is very important, as he has a hereditary blood disorder which causes his blood to hypercoagulate.

Well, I've done the heparin bridge with Bob three times. The first time, the doctor ordered six syringes of Lovenox (injectable heparin) and I was given the schedule as follows:

Day 1: Stop Bob's nightly dose of warfarin
On day 3, one injection of .4 ml Lovenox.
On day 4, one injection of .4 ml Lovenox.
                       Day 5: have the procedure done in the a.m. and give one injection .4 ml Lovenox in the evening. Start Bob back on the nightly dose of warfarin.
Day 6: One injection of .4 ml Lovenox.
Day 7: One injection of .4 ml Lovenox.
Day 8: Last injection of .4 ml Lovenox.
And be sure to have Bob's blood tested for his weekly PT/INR.

So that's what I did.  And everything seemed fine. But when the results of his weekly PT/INR (which is the test for blood thickness) were scary low (too thick), I called the nurse and she told me not to worry about it because heparin will skew the results...

Then the next time I did the heparin bridge, with a different doctor and a different procedure, this doctor ordered me 5 syringes of Lovenox and I was given the schedule as follows:

Day 1: Stop Bob's nightly dose of warfarin.
Day 3: Two injections of .4 ml Lovenox, one in the a.m. and one in the p.m.
Day 4: One injection of .4 ml Lovenox.
Day 5: have the procedure done, no Lovenox.
Day 6: One injection of .4 ml Lovenox in the a.m. and start the warfarin that night.
Day 7: Last injection of .4 ml Lovenox.
And I was told not to bother with having Bob's blood tested for his 
weekly PT/INR until the next week.

Now I'm confused, because I have two different doctors doing it different. I ask the second doctor about this, but he tells me that his way is right and the first doctor was wrong.  Okey-dokey. So I do it this way, and everything seemed fine. Though the next week Bob's PT/INR was low, but the nurse told me not worry because, once again, the Lovenox had skewed the results....

Then Bob has the foot surgery, so once again we need to do the heparin bridge. I ask the foot surgeon if he will order the Lovenox and give me the schedule, but he tells me that he has no clue how to do this and sends us to see Bob's primary care doctor to set it up.

So, we went to see the primary care doctor, who was on vacation and so we saw a substitute doctor. This doctor told me he would send an order to the pharmacy for the Lovenox and gave me the following schedule:

Day 1: Stop the warfarin
Day 2: Two injections of .8 ml Lovenox, one in the morning, one in the evening.
Day 3: Two injections of .8 ml Lovenox, one in the morning, one in the evening.
Day 4: One injection of .8 ml Lovenox in the a.m. None at night.
Day 5: Have the procedure done. No Lovenox.
Day 6: Two injections of .8 ml Lovenox, one in the morning, one in the evening. Start the warfarin.
Day 7: Two injections of .8 ml Lovenox, one in the morning, one in the evening.
Day 8: One injection of .8 ml Lovenox and see me in my office that afternoon to check his PT/INR.

All righty. This is totally different. And he's ordering .8 ml instead of .4 ml. And imagine my surprise when I go to pharmacy to pick up the Lovenox and find the doctor ordered three boxes which means 30 syringes of .8 ml Lovenox! And I'm thinking wow, what am I going to do with all of this?

So we go back to see that doctor on Day 8 and he checks Bob's PT/INR, which is low (too thick). He tells me that I have to keep giving the injections until Bob's PT/INR hits 2.00 and he orders twice weekly tests to monitor it. He also tells me that it's dangerous to go back on warfarin without the Lovenox because warfarin, while it is building up in the system, can actually cause the blood to clot. And he explained that the PNT/INR test only tracks the warfarin, not the Lovenox, so the Lovenox is doing it's job until the PNT/INR levels out..

And I tell you, I used all three boxes of those syringes before Bob got back up to 2.00.

I'm thinking, I mean, I really believe this last doctor seems to be doing it right.

Now I wonder, I really wonder, were those first two doctors trying to kill him? Or are they just idiots? Or what? Jeepers.

But thank god, Bob survived these ordeals. And now, I know better...

Saturday, July 20, 2013


Bob's foot post-surgery.
Those yellow things are the "pins" holding the bone straight.

Notice those two small toes which the doctor botched...

Thursday, July 18, 2013

Foot Surgery -- Again?

On Tuesday, we went back to the foot surgeon to have Bob's foot unwrapped and stitches removed.  The whole day started off on the wrong foot, no pun intended.

First, Bob woke me up early as he was terribly constipated. He's had more and more of this problem lately, and has really been off his regular BM schedule. Previously, I just charted his bowel movements on the calendar and when I saw that it was "time again" I would administer a laxative in the evening and, like clockwork, he would come through before the next morning. This used to work pretty slick, but is not working so slick anymore. And though I've adjusted the schedule, he is still catching me by surprise.

Anyway, so I gave him a suppository which works quicker than a laxative and figured he'd evacuate within a couple of hours. But no such luck. Three hours later, he is still complaining. Four hours later, still nothing. Finally, I had to, um, "investigate" and found he had a pretty good wad of stool impacted there. Which means get out the baby oil and the latex gloves and, well, I'll leave the gory details to your imagination.

This whole process put us greatly behind schedule. And even after I had him, I thought, cleared out, he still insisted he "had to go". So, I had to dress him while he sat on the bedpan. No easy feat. Then he insisted there was more "stuck" and I had to get out the gloves and the oil and repeat the above described process, not once but twice. By then, the clock is ticking and I am getting quite frantic as we are way behind schedule. Finally, I got him shaved, still sitting on the bedpan. It wasn't until the wheelchair transport arrived that he agreed to finish dressing and get into the wheelchair. Of course, we were dashing for the door. Because the transport van will leave if you are not outside within five minutes. That's the rule.

Once in the van, I sit down, attach my seatbelt and sniff, sniff... oh crap! and I mean this quite literally because I get a whiff of something distinctly unpleasant and it's coming from me. Call it my new perfume: "Eau de Poop". But I check my hands, my arms, and can't find the culprit ... once we arrive, I dash into the restroom, thoroughly wash up, but still there is a lingering smell... and I do hope it's just my imagination.

So we got to the doctor's office early and again the doctor is running late. The first person to come into the room was the nurse. She took off Bob's boot and the wrapping and then took off the electrodes and finally the gauze dressings. That's when I realized something was terribly wrong. Three of Bob's toes were indeed straight, but the last two toes, the smallest ones, are still contracted and curled up.

All week Bob has been complaining about his foot being "f--ed up" but I had figured it just hurt from the surgery and told him that, in so many words. Now, Bob is glaring at me, saying "See? See? SEE?" The nurse tells us that someone will be "in shortly" to take Bob to have his foot x-rayed. "Shortly" turned into 45 minutes. I have to call the transport and be put on "stand by", which means it will take forever to get home.  Finally, the x-ray tech arrives and wheels Bob away. When he brings Bob back, I can tell something is wrong by the look on Bob's face. I say, "What's wrong?" and the tech nonchalantly tells me that Bob "wet himself".

And sure enough. The condom catheter has once again had a "blow out" and poor Bob's shorts are drenched. I rummage through Bob's wheelchair pack and find a towel and try to dry him off. At that point, I am afraid to change his clothes because we are still in the doctor's office and I can just imagine the doc coming in at the exact moment when I have Bob's pants off. So I mop him up as best I can and drape a towel over his lap.

And there we sit. For yet another 45 minutes. Bob drenched in urine and me smelling of Eau de Poop. I tell you, we make a great couple!

Finally, finally, finally the doctor arrives. He is pleased with the first three toes. He says that he is surprised that the two smallest toes didn't straighten out. He had thought just cutting the tendon would relax them. He wondered, out loud, if he didn't make a deep enough cut. Then he says, "well, we can go in there and remove those knuckles too". Though first, we would have to wait for the big toes to heal and have those pins pulled out...

And I am thinking, no please, not another surgery. Because that means another $250 up front---and I already maxed out the credit card with this one, and I don't know how I'm gonna come up with another $250 up front--- not to mention taking him off the warfarin and the screwing around with the lovenox (more on that later) and the running around for pre-op testing etc. etc. and then, poor Bob having to go through this all over again....

But Bob is still complaining that those little toes hurt, so we'll see how it goes and do what we have to do...

Jeepers. What next?

Saturday, July 13, 2013

Armed & Dangerous

That's me, I'm talking about: The Armed and Dangerous Caregiver.

So, this week, we were back at Pain Management. You might remember that last month at Pain Management, I was read the riot act because Fentanyl did not show up in Bob's urine drug screen. Since then, I have done some research on this subject. And I was prepared for battle. I was, indeed, armed and dangerous. And it was a good thing, too.

Because, instead of seeing the physician's assistant, which is the normal case, who do you think comes walking in through that door? The Big Cheese, himself. The Doctor. Who we never ever see, because, you know, he's too busy to see us.

And the first words out of his mouth were "I hear Robert is not taking his Fentanyl patch!"

Then, he turns to Bob and says, "Are you selling those patches? Or are you giving them away?"

Of course, Bob, with his aphasia, just sat there with a sort of shocked and confused look on his face. Then, the doctor turns to me and says, "Or are YOU using them?"


But I had come prepared and, after that initial moment of shock, I took a deep breath and presented him the following.

"You know, I was pretty bewildered about those test results, because I put those patches on Bob every 72 hours as directed. So the first thing I did, when we got home, was call Watson Laboratory, which is the maker of the Fentanyl patch. I got transferred around to three or four people and they were all pretty much as bewildered as I was, but the consensus seemed to be that the laboratory which ran the test must have made a mistake, because if the Fentanyl patch was faulty, if it was not absorbing into my husband's skin, my husband would have suffered withdrawal symptoms.

"So after that I contacted the laboratory, I called them seven or eight times, and each time I was told that I could not be connected with the laboratory but I could leave a message and someone would call me back. No one ever returned my calls. I did do some research on the internet and found that Fentanyl cannot be detected in an ordinary urine drug screen, that a special test must be run strictly for Fentanyl and that test is called gas chromatography mass spectrometry or GC/MS. I did not get a detailed billing from the laboratory, but when I looked back through my records, I found that this is a new laboratory your office is using and the old laboratory, Millenium Lab, had sent me a detailed billing last year. You will remember that that urine drug screen did show that Fentanyl was in his system. And that bill shows that the old laboratory ran 16 different tests including the GC/MS," At this point I held up the billing from that lab, "and the explanation of benefits from the insurance company indicates that this new lab only billed for eight different tests, unfortunately it does not tell which tests were run," I held up the Explanation of Benefits, "but that makes it seem to me that they skipped some of the tests. Did you order the correct test for Fentanyl?"

By now The Doctor has a rather shocked look on his face and he says, "Yes, I know there is a specific test for Fentanyl. I don't know if it was ordered."

So I say, "Well, so there is that possibility which would explain the test results. The only other thing that I could think that might have skewed those test results is the fact that this was the first time we used a urine sample which was taken from a catheter bag. Would that have skewed the results? Do you think?"

The doctor says, "I don't know. Hmmm... Maybe something in the plastic could have made a difference..."

And I say, "Well, anyway, the people at Watson suggested I bring in the packaging and used patches to show you that, indeed, we are not selling these or giving them away, " I hold up a zip-loc bag filled with Bob's used patches and packaging, "But I guess this doesn't prove I'm not using them. Though if I was, I tell you, I'd be quite loopy and you can see that I am not. However, you are welcome to check me over for patches and also, you can check Bob, his patches are on the left side under his shirt."

And the doctor says, "That won't be necessary. I will make a point, next time, to make sure they run the test for Fentanyl."

Then, he handed me Bob's prescriptions and we fled.

All in a day's work.

Wednesday, July 10, 2013

Surgery & The Electric Boot

On Monday afternoon, I wheeled Bob over to the surgery center for his foot surgery. I was feeling pretty confident about the whole procedure as the surgeon had said it was "a simple procedure" and did not even require general anesthesia. My thought was since the surgery center is only about a block away from our house, I would leave once Bob was prepped and ready, go home and spend a blissful hour alone. I thought I might listen a meditation tape that I had purchased (for 4 bucks) and had only been able to listen to once as Bob absolutely hates it.

The meditation tape is based on siddhi meditation which deals with "sound vibrations" and basically the whole tape is someone chanting "aaaaaaah" along with affirmations. The only time I played it at home, Bob kept interrupting the "aaaaaahs" by saying "Ooooh!" and "Eeeeeee!" and "Ooh-Hoo-hoo!" and such nonsense that I laughed all the way through it.

Anyway, that was my plan. And you know what they say about the best laid plans...

So we get to the surgery center and the first shocker is that they want $250.00 up front. Two hundred and fifty bucks! I nearly dropped over dead. Fortunately, we still have one credit card that works, and I was able to charge it, but jeepers. There goes my emergency fund, because now that card is maxed out.  Then, they have me sign a form indicating that I understand the $250.00 is just a "down payment" and there will more charges for the doctors, anesthesiologist, supplies, etc. etc. Lord almighty, I am going to hate to see this bill...

Anyway, we get Bob into the pre-op room and find next that the nurse has no way to move him from his wheelchair to the hospital bed. She asks me, "Can he stand and pivot?" I tell her, no. She asks, "How do you do it at home?" I tell her we use a slideboard and ask her if they have such a device. But no, they don't have a slideboard. Or a hoyer lift. Or even a couple of burly guys who could pick him up and lift him onto the bed. So after making a few phone calls, six nurses come into the room. Count 'em! Six! And it takes all six to lift Bob from the wheelchair to the bed and damn, if they didn't almost drop him at one point.

By then, I am really looking forward to leaving and listening to that meditation tape. As I really could use some inner peace about now...

Then the anesthesiologist comes into the room. This guy is like 18 years old, I swear. Either that, or I must be getting old. Because he looked real young to me.  He tells us that they will numb Bob's foot with a local anesthesia and also give him a sedative via the IV. Then he looks through the chart for quite awhile, asks a bunch of questions and says, "I'm going to be honest with you." He says this to me, not Bob. He says, "Your husband is in very poor medical condition and should not even be here. This procedure should be done in a hospital where they are more capable of handling emergency situations. So I want you to know, that if I see anything, and I mean anything, that makes me think he's at risk during this procedure, I am going to call an ambulance and have him transported to the hospital immediately. In fact," he adds, "I had to call an ambulance for another patient this morning. I don't take any risks."


Then he tells me that I must stay close by, in case of an emergency.

So there went my plan of a blissful hour.... So much for finding my inner peace.

Not to mention, now my stomach is in knots.

Anyhow, after all of that, and after spending an uncomfortable hour in the waiting room, being held a captive audience to LIVE Court TV (which was playing some long drawn-out murder trial, where the attorneys kept asking the witness the same question over and over, different ways, just trying to elicit a different answer) and listening to the little girl sitting next to me, who is reading out loud from (of all things) The Old Testament of The Bible, finally the surgeon comes out and tells me all went fine.

And a half hour later, the nurse comes running out asking me to come back into the recovery area as she is having problems with Bob. So we dash back there, and Bob is in the hospital bed crying and screaming, "HURTS! HURTS!" And the nurse tells me that she has already given him five doses of morphine and she does not know what else to do. I tell her that morphine usually doesn't work on Bob,  at least it hasn't in the past, and do they have something else they can give him? She leaves the room, and I tell Bob that he better quiet down or they are not going to release him to go home. And does he want to be transferred to the hospital? And that quieted him down. Because, truth be told, he hates hospitals.

Then the nurse came back with some oxycodone and Bob said, "Finally! Yay!" and after that, and after six nurses arrived again to lift him from the bed to the wheelchair, we went home.

They sent him home with this electric boot:

which is not supposed to be removed until the surgeon sees us next week. Underneath, there are gauze dressings and electrodes attached to a TENS unit and, I am told, there are metal "bones" and screws holding his toes straight and no wonder it hurts like a devil.

He is still in a lot of pain.

And it looks like it's going to be a trying few days here.... for both of us.

Monday, July 8, 2013

More Condom Catheter Horror Stories...

I tell you, when Bob got his first supply of condom catheters, I was in a state of bliss. It was a godsend. A miracle. Just to be able to take him somewhere and not spend the whole freaking time in the men's room. I was so elated, I was ready to wax poetic on the subject, you know, a la John Keats, who wrote:

A thing of beauty is a joy forever,
It's loveliness increases, it will never
Pass into nothingness; but still keep...
etc. etc.

Except my version would have gone something like this:

A bag of urine is a joy forever!
Because then you never never never
Have to spend all your time in the blasted men's room!
etc. etc.

Okay, it needs work. But that was just a draft that never got off the ground because just when you think you've got it all figured out and everything is working perfectly, an event such as The Serial Killer & The Exploding Catheter happens. Click here if you missed that exciting episode.

Since then, we've had The Amazing Cannonball of Urine episode. Which happened one day while I was in the kitchen and heard Bob crying out, "Help! Help!" Of course, I immediately dashed to his rescue and was absolutely horrified to see a giant balloon of pee (think, size of a grapefruit here) anchored on Bob's thigh, growing between the condom of the catheter and the anti-reflux valve of the leg bag. And no matter what I did, trying to squeeze/press/push that ball of urine into the anti-reflux valve so it would go down into the bag, it simply was not working. The valve was simply not "anti-refluxing". And here, all the while, was Bob still peeing, still filling that balloon of urine, which was growing and growing and growing to the size of a cannonball and I was scared out of my wits that the thing was going to pop and blast its contents all over the room.  Finally, I managed to pinch the end of the condom cath with my fingers, and quickly, very quickly, disconnect the leg bag and empty the contents of that cannonball into the urinal....

Since then, we've had no end of "blow outs" and "back ups" and so I'm talking about drenched bedsheets and drenched Bob and drenched wheelchairs. One of which happened while Chris was on duty and I was at the grocery store, in the cat food aisle, when my phone rings and I hear a frantic Chris on the other end...

The big problem seems to be that there is a space in the condom between the head of the penis and end of the spout, and this is where the urine collects and gets stuck or backs up.  Not to mention that this uncomfortable for Bob.

Then there was the day that I peed on Bob's bed--well, not technically, but-- this happened when I was emptying the leg bag contents into a urinal, something I've done many times without incident, except this time, when somehow the drainage valve slipped out of the urinal and I didn't realize it until I went to empty the urinal and found it already empty. Because I had pretty much just emptied the whole contents of the leg bag onto the bedsheets...

Then there's the ongoing bed bag trouble. These are the bags that attach to the bedrails, as opposed to the leg bags which attach to, well, Bob's leg. And I don't know who designs these things, but I bet the designers have never actually knelt on the floor and emptied urine from one of them. Because when you're kneeling/squatting on the floor trying to empty the urine from the bag, the drain valve is a very important thing. Case in point, the first bags we received had a drain valve which was sort of short rubber hose with a plastic clip on it.  The clip was extremely difficult to open and if/when you finally got it opened, you had to be careful not to open it too far. If you opened it too far, the rubber hose piece would fall off. Thus all the pee would drain out quite quickly, which is not a bad thing, unless there is more pee in the bag than your bucket can hold and no longer a hose to clip to stop the urine flow... Which happened.  Many times. And then, too, there was the day which the hose and clip both fell off the bag into the bucket. And I had to fish them out. With my bare hands. I tell you, I did this without even thinking and it wasn't until the aroma hit me, and I realized I had my hand in a bucket of pee, that I nearly lost all my cookies right then and there.

So I requested a different style of bed bag and got one. These new bags have a fancy looking "Easy Tap Drain Valve". This valve works like a plastic slide bolt. Which looked like a good idea. Until you find out that it is NOT an 'easy tap' at all, unless you are using a hammer or a wrench or both. And once you do actually manage to get the darn bolt slid over, it's nearly impossible to slide it back in place. And once again, there is urine all over the floor. The second bag in the set only survived one night's use and in the morning, the bolt action got stuck in the middle and I couldn't push it forward or backward and had only the slightest trickle of pee coming out of and I figured at that rate it would take over an hour to empty 1200 ml of urine, so I threw the whole shebang, still filled with urine, into the trash. Biohazard, be damned. And then I had to fish out the last of the clip and hose bags from the trash, attempt to bleach it out, no easy feat, so it could be reused. Then I had to duct tape the hose back onto the drain....

And why is it that the insurance company only covers two bags a month? Don't they realize how gross these things can get.  Even the bags themselves are marked "single usage only"....

So anyway, we are back to Square One on the condom cath front. The medical supply company is sending more samples of other styles/designs of both the condoms and the bags and we will see what happens. Hopefully, the supply company will figure out a solution. We can't be the only ones dealing with this issue.

Today, we are off to the surgery center for Bob's foot surgery.

Never a dull moment here, at The Pink House.


Friday, July 5, 2013

Bob's First Botox Treatment

On Tuesday, I wheeled Bob over to the new neuro doctor's office for his first Botox treatment for cervical dystonia. Of course, it was raining cats and dogs that day, but we were going--come hell or high water, because it had taken 3 months to get in to see this guy.

Before we left, I glanced through the "Botox for Cervical Dystonia" brochure that the neuro doctor had given us three months ago. I guess I just wanted to be informed. Unfortunately, it only ended up scaring the living daylights out of me. All those side effects, including "problems breathing which can be severe and result in loss of life".  Jeepers...... For a few minutes, I actually considered cancelling that appointment. But then I reminded myself what Dr. Doom had said about Botox being "one of the safest drugs around" and coming from Dr. Doom, that really means something. So I sucked down my fears and we went.

We got there early. And the doctor was running late.

So we sat a full hour and half in the waiting room, which gave me plenty of time to worry about things like "problems breathing" that can "result in loss of life" and to contemplate grabbing Bob and bolting for the door.

Then Bob's name was called and we went in.

Botox works because it basically paralyzes the muscle it is injected into, thereby loosening up the muscle contraction. It is injected into the muscles via a prefilled syringe with a very, very long, thin needle. This needle/syringe is connected to a computer which measures the muscle contraction. Basically, the doctor sort of pokes around in the target area to find the tightest spot of the muscle and when the computer makes a horrendous noise indicating a tight spot, the doc plunges in the Botox. He did three injections on one side of Bob's neck and two on the other side and one near his shoulder.  Then he attacked Bob's hamstring, which is also contracted from dystonia (Bob can no longer unbend that knee) and injected Bob two more times.

All this time, I sat across the room watching and worrying. And though I worried about side effects (and still do, believe me, I am watching him like a hawk), I also worried Bob might drop over dead on the spot. This because Bob's old neuro doc said it was a dangerous procedure to do on the neck as the needle could slip and hit his spinal cord causing immediate death.

But the procedure went fine.

And so far, not a single side effect.

And fingers crossed, the doctor said we should see some positive results in two weeks. At which point, he will order at home PT/OT. 

Next on our agenda: foot surgery on Monday...

Monday, July 1, 2013


This is not the title of another depressing post. This is the title of Bob's latest drawing. And what do you see?? Look closely. Enjoy!