Brain Rewired

BRAIN

 You might remember Bob's last drawing, which he called "Brain"......

This new drawing he calls "Brain Rewired".

BRAIN REWIRED

by
Bob
(click to enlarge)

And yes, drawn with his left (non-dominant) hand.

Happy Easter!

Turning the Corner at Rehab, and then, um, ER

Remember this very long railing at Rehab?

Yesterday, they got Bob to...

Turn the corner! Whoo hoo! and I'm clapping and taking pictures, because
it does mean he is putting more weight on that right side and
he was very scared at first, I was so proud.... but then....

He didn't feel well, so the PT took his BP which scary high plus his
heart rate was really high
and we ended up over at the Emergency Ward
where his oxygen was really low....

Where he was diagnosed with pneumonia and they wanted him kept
in the hospital, but he insisted on going home..... and who can resist that face?
Certainly not me... So he's home now on antibiotics.

Never a dull moment, here at The Pink House....

An Appointment With Doom

Last week, we went to see Dr. Doom, who is Bob's ENT (ear, nose, throat specialist). Dr. Doom is probably one of only two doctors I totally trust. Which is rather sad to say, as Bob has 7-8 different doctors...

We went there to get a second (well, actually fourth) opinion on Botox treatments for Bob's cervical dystonia.

The opinions we've gotten so far on this are thus:

First neurologist: "Botox injected in his neck would be fatal. Do you want to kill your husband?"

Second neurologist: "Fatal? No. It won't be fatal if it's done correctly. And it will help him hold his head up!"

Third neurologist: "The Botox could leak through to his larynx and paralyze it which will cause even greater swallowing/aspiration/speaking problems."

All righty.

And I wonder why I'm having problems making this decision...

So basically, I paid Dr. Doom a $35.00 co-pay just to talk to him and get his expert opinion on this matter.

Now Bob's been seeing Dr. Doom since around 2001, when it was Doom who diagnosed and successfully treated Bob's cancer. Doom is not his real name. It's the name Bob dubbed him back then, because Dr. Doom will tell it like is. He does not sugar coat things. And he will lay it all out, worst case scenario, so there won't be "any surprises".

Dr. Doom also does Botox injections. Though he does this "on the side" for cosmetic purposes.

And it's Dr. Doom who has been ordering the swallow videos, so he's familiar with Bob's dysphagia.

So I figured he'd be a good go-to guy for a fourth opinion. I figured he'd tell it to me straight.

And Dr. Doom's opinion was this: "If Bob were my brother, I'd tell him to go for it. The chance of side effects being that bad are pretty slim. The benefits certainly outweigh the risks. In my opinion, Botox is one of the safest drugs around. And even if he has a side effect, it will only be temporary and will wear off in 3 months or so. He could have those injections, Diane, and be holding his head up straight next week! And look at the pain and discomfort he's in now."

And: "The reason that first neurologist told you it could be fatal, in my opinion, is that the doctor just did not want to do the procedure."

And: "Really, Bob's swallow is so terrible, I doubt anything could make it much worse."

And: "Totally safe to do Botox on warfarin. Worse that could happen is Bob develops a hematoma on the injection site. That's sort of like getting a bump on your head. It will go away."

And: "Just make sure the insurance is going to cover it, first. For a procedure like that, the drug alone will cost around $3000."

And: "Ask them to do it to his toes too. Heck, I think it's worth a shot."

Unfortunately, Dr. Doom does not do Botox treatments for cervical dystonia. I asked, as I would be much more comfortable if he did the procedure. But he highly recommended the neurologist who would be doing the injections. He said he's known that doctor for 18 years and has, in the past, actually done Botox injections with him for patients who require Botox on their vocal cords.

So I'm leaning more and more toward the Botox. Though this is still a scary decision to make. I do plan to ask the neurologist about using Phenol instead of Botox. Dr. Doom was not familiar with Phenol as an alternative...

We see the neurologist next week.

Legal Update

Yesterday, I got word from our attorney that the hospital has denied our claim and will admit to no wrongdoing in our case.

This week, our attorney will formally file the lawsuit at the court house. He told me it could take "two years" to get this to court. Though, there is still the possibility of an out-of-court settlement before then. And he thinks he can "expedite" the case.

Of course, this news is disappointing to me. I had hoped for a quick settlement, and I certainly can't believe that the legal team looking at the nurses notes from that night can say, and/or believe, that there was "no wrongdoing" on their part...

Our attorney, however, was absolutely excited by the news. He told me that he "almost sent them a thank you note". Because now, he says, we can get/go for an even larger settlement. He told me that he's been doing this for 40 some years and this is a "BIG BIG case" (his words).

His law firm, by the way, only takes "catastrophic" personal injury cases. I guess that means, we are "BIG BIG" even for a catastrophic personal injury case...

Jeepers.

I guess I should send them a thank you note too.

The Continuing Saga of the Condom Cath

Sizing Gauge

Three years ago, if anyone had told me that I would one day be blogging on the internet to total strangers about condom catheters and penis sizes, I tell you, I would have thought that person quite deranged.

But alas, life is strange and here I am....

Because, for these past two weeks, I have been up to my ears in sample condom catheters.

This because, the first box sent were too small.

Now you'd think the urologist, who ordered these, would know what he's doing.

He did, in fact, have Bob "try on" a few samples while we were in his office.

But when they began leaving an ugly red gash on Bob's you-know-what, I figured out that the doctor had ordered the wrong size. Especially, when he started to bleed!

Which was probably why the darn things were so frustratingly hard to get on. And to think, I struggled for two full weeks, wrestling with the fat worm, trying to squeeze poor Bob into them. Jeepers. But how was I to know? I mean, I've never done this before. And I was told, they are supposed to be "snug"... and of course, that home health nurse was absolutely no help in "teaching" me at all.... So here I am, once again, flying by the seat of my pants, trying to figure stuff out on my own.

But after the red bleeding gash appeared, I contacted the medical supply company who contacted the manufacturer who sent us some samples in the next two sizes up. Along with a sizing gauge.  Which was rather shocking to me. As there are only five sizes on it. And what's with that?

Because I know, and you know, and certainly almost every woman knows that men do NOT come in ONLY FIVE sizes.

So we started with the 30's which was "one size" up. But they still seemed too tight at the base. Then we tried the next size, 35's, which was a more comfortable fit and seemed the right one to order. Until we went out and about with it.

The first time, the whole darn thing slipped off. And there was Bob, happily peeing away, not even realizing he had become disconnected.
GA!

The second trial, when we got home, I discovered a huge sausage shaped balloon filled with pee between the bulb tip of the catheter and the catheter leg bag. And no matter what I did--shaking it this way and that--it wouldn't go down. Of course, I couldn't take it off him that way without a big mess.  So I'm shaking the sausage shaped balloon of urine, back and forth, trying to get the urine to flow down into the bag and then the darn thing decides to back flow, and it all squirts up out of the base of that condom.  So there I was with another mess on my hands. (And my arms, and Bob's legs, bed sheets and clothes.) GA!

Sizing Gauge #2

So I call the medical supply company again, and she calls the manufacturer who calls and tells me to try the 30's again, but this time, "cut it off" (meaning the base of the catheter, not Bob.)

So I try this, and it isn't easy. Imagine me, with sharp scissors, trying to carefully cut off the too tight base of the catheter while he is wearing it. Because that's the only way you can do it. These things have adhesive inside them. I tell you, Bob must trust me.

After I cut it off, the whole shebang just sort of glides off after an hour.

By then, I am truly beginning to wonder if this experiment is worth it.

So back with the medical supply company, and she decides to send me some different brands which come in different sizes.  Along with yet another sizing gauge, with different sizes, although, still only five of them.

Which makes one wonder, who the heck is running these companies? I'm thinking, it must be straight men without a lot of locker room experience...

So we tried "Freedom" and "Spirit" and "Liberty" (and why does this sound like a political campaign ad?)

We've had them too tight, too loose, and one too darn long--it got caught up and stuck in his pubic hair. So there I was, again, with sharp scissors in hand, aimed at Bob's private parts. Yikes.

We've had them too sticky--think, super glue here. And it's sticking to everything but what it's supposed to. And we've had them not sticky enough...

We've finally hit on one that I think/hope will work. It's called "Pop On".  Size 32. It's made of a soft silicone instead of latex. And you wouldn't believe how easy it is to get on! Though it's a bit of a dickens to get off.

And so far, so good!

I can't even believe I am blogging about this.

Life is, indeed, strange.

Another Rant about Pain Management Rules & Regulations

Today was Bob's monthly scheduled appointment with Pain Management.  Until they called this morning and cancelled it.

The reason for the cancellation was that they have too many patients this week and have met their federal quota for dispensing narcotic scripts and therefore they are canceling appointments. 

And, of course, the only appointment available next week is at 9-freaking-45 a.m. on Monday. Which means I must get up at 4:00 a.m. in order to get the dog walked and myself and then Bob ready for a 9:00 a.m. transport ride.

And the home draw technician is due to arrive on Monday morning too.

And then he has a 2:00 Rehab appointment that afternoon. Bob is going to be worn out after that long day. Not to mention, me too.

And we can't wait until the next week, because then Bob will be out of pain medication. Because, you know, the federal government prohibits refills on these prescriptions.

And they prohibit the doctor from calling the prescription to a pharmacy.

So you have to go in person to see the doctor to get the handwritten prescription. Once at the pharmacy, the pharmacist must contact the doctor's office to verify this is, indeed, a real prescription. Even if it's the exact same prescription you've been picking up at the exact same pharmacy for two years now....

Oh, and then pharmacist has to check your ID. Even when she recognizes you on sight and already knows your name.

Because that's Big Brother watching you and telling doctors and pharmacists what they can and can not do.

And since the War on Drugs against narcotic pain medication has been launched, I haven't seen one damn statistic that it has done anything to curtail abuse....

I tell you, these government rules are nothing but a huge pain in the ass for legit pain patients like Bob.

And I'm done ranting now.

(Even though I haven't even mentioned the twice yearly, government required, urine tests!)

That's all I'm saying.

A Day at the Fair! (Book Fair, that is...)

Gateway to the "Tickerin" Book Fair!

Every year, there is an Antiquarian Book Fair in our city. And every year, pre-stroke, Bob and I went to it. And I, especially, always looked forward to it, as I love 19th century poetry books and have a small collection of them at home in a bookcase.

We missed the last two years...

Two years ago, my mother offered to hire a caregiver to watch Bob so that I could go on my own.

But it didn't feel right. Going alone.


And it seemed too difficult to take Bob...

And then there is the money. I mean hard to spend money on frivolous things when Bob needs so much for his medical care. And we are living social security check to social security check....

Then this year, I saw the advertisements and thought.... what the heck.

Let's give it a go. I deserve a little break, right? And a bit of fun. And maybe a new/old book to add to my little collection.

 Though this decision was not without a lot of trepidation. I mean, what could go wrong with an incontinent guy in a wheelchair that I have to push through a crowded auditorium filled with expensive merchandise? ha!

This book was priced at $35.00.
I managed to get it for $20.
It's from 1882.

As this is not an ordinary book fair. This is an "Antiquarian Book Fair" filled with antique, rare, collectible books and it's the kind of place you go if you want to, say, drop $200,000 on a first edition, signed copy of The Great Gatsby.... or $950.00 for a "nice" early Yeats with fraying edges... I kid you not.

Yes, a bit out of our league.  Though, in the past, I usually managed to find something in the $20 range. And it's great fun, I think, looking at books which are worth more than our house!

A collection of love poems.
From 1881.
It was marked at $30, I got it for $24.

So yesterday, we went. You should have heard Bob trying to say the word "antiquarian"-- it kept coming out like "tickerin".  Ha! Heck, "antiquarian" is a hard word for even me to say right. And I sort of like that: The Tickerin Book Fair. Has a nice ring to it.

The place was packed. There were over 100 dealers from all over the country. And many of the booths were difficult to get the wheelchair into--some I could not get him in at all, and I had to leave Bob sitting in the aisle. And people were continually backing into us. Or blocking our path.

And the auditorium is old and the floors uneven and a few times the wheelchair started rolling away from me---once headed straight into a glass bookcase filled with "fore edge" books priced around $3000 each!

I tell you, I did some fancy foot-work with that wheelchair. It took a long time to get through the place, in fact, we missed the last entire aisle because our transport was due to arrive...

But by the end of the afternoon, I had spent $44.00 and procured two very nice 19th century poetry volumes...

It was the first time since 2010 that I have spent that much money so frivolously! And it sure felt good.

When we got home, we were both utterly and completely exhausted. Bob immediately fell asleep. My legs were killing me.

But we were both happy, very happy, to have gone out and done something "normal".

Back at Outpatient Rehab!

On the NuStep

This week, Bob started physical therapy at Outpatient Rehab. He is scheduled for twice weekly therapy through March. This is the third time at Rehab for him.

It had taken awhile for the approval to come though the insurance---as once again, the primary care doctor's office had screwed up the codes.... I finally just asked the neurologist to send in the script. After he did that, it was approved within a day.

Bob Walking the Hall at Rehab
That's 40 feet of railing!

And, once again, bless their souls, the hospital's Financial Aid Department agreed to pay the $35.00/session co-pay for us.

I was quite pleased that he has the same therapists assigned to him as last time.

In fact, the main PT requested his assignment when she saw his file come in. It is good to have Bob working with therapists who he likes and who like working with him!

Since we were there last, they have remodeled the facility and now have a railing that is twice as long as the old one. A big challenge for Bob! Especially since he lost some of his strength and endurance since November.... He did manage to walk that rail three times yesterday.

A new problem he's dealing with this time around is the curling toes on his left (unaffected) foot which causes him a lot of pain when he walks. So now, he's not only paralyzed/weak on the right side but has pain each time he steps down on left foot.

I have to admit he's a real trooper for getting up and trying to do it.

And me, I don't have any big delusions this time around. If they get him up on that hemi-walker, great! If not, as Bob would say, "oh well"...  I'm just happy to have a break from doing all those at home exercises.

This time, we made his goals simple: to increase muscle strength and endurance. Hopefully, he will "progress" with those goals. And we'll see what happens.

Estate Planning with Aphasia

Warning: This post is rated R, for strong language content!

Last week, our medical malpractice attorney sent another attorney, who specializes in "estate planning", to our house for a consultation. The idea here was start the process of drafting "Last Wills & Testaments" (ours will need to be updated), "Power of Attorney" paperwork and talk about the possibility of setting up a Special Needs Trust for Bob once we have a settlement.

I thought I had prepared Bob for this appointment. I had, in fact, sat down with him twice to explain that an attorney was coming here to talk about money matters like wills and other legal paperwork and not to worry, I'd do all the talking.

The whole meeting started off on the wrong foot with Boomer jumping around like a mad hound.  I had to corral the dog and get him off into the back bedroom, and by the time I got back to Bob's room, the attorney had already opened his briefcase and settled down on the couch---which, because Bob is blind in the left eye, is out of Bob's range of vision.

I probably should have asked him to move to the chair facing Bob. (Live and learn, Diane.) But, alas, I did not. Instead, I sat down in the chair facing Bob.

The first thing the attorney said was that he wanted to be right up front and tell us that he had done the estate planning for the doctor who performed Bob's carotid endarterectomy and he wanted us to know that so it would not be construed as a conflict of interest. So, I explained the suit was not against the doctor but against the hospital staff and we went on to talk about happened in the hospital ICU on that night in October 2010 when Bob had the stroke....

Bob, hearing all of this, decided to contribute his version of what happened that night. The conversation went something like this:

Bob:  They fucked me up. See? Neck. (points to his neck) and... um, fingers... (points to his legs) and, and, legs. (points to his arm).

Attorney:  I see. I am so very sorry this happened. (Then, shuffles some papers, turns to me) OK. Let's get down to business. Do you have copies of your current wills?

Me: (handing him the papers) I know we need to update these. My concern right now is, until then, if anything happens, will they hold up in court? We didn't use an attorney back in 2001.

Attorney: (reads the wills) Oh, sure, these will hold up in court. It's what we call a 'mom and pop will'. Did you download this form from the internet?

Me: No, I just used our previous wills as a template.

Bob: (gesturing to the attorney, who he can't see, because he's sitting on the couch) Hey you! You! THEY FUCKED ME UP! SEE?

Attorney:  Yes, I see they, um, messed you up bad. (shakes his head) Just terrible. (Then, to me) The problem with a 'mom and pop' will is that you may have to locate the witnesses to validate the will.  Do you still have contact with these people?

Me: Um, No, they were are neighbors at the time, but they moved.

Attorney: Well, if anything happened, you might have to track them down. Do you know if they are still in the area or---

Bob: (gesturing at the attorney) Hey you! They fucked me up! OK? SEE?

Me: (thinking) Jeepers, what's gotten into Bob?

Attorney: (startled, glances at Bob, then back to me)  Anyway. These will certainly need updating. Especially in light of what's happened since. For example, you have your husband listed as a executor of your estate and I'm sure--

Bob: HEY YOU, THEY FUCKED ME UP! SEE? Arms! (points to his legs) and neck! (points to his neck) and legs! (points to his arm)

Me: (silent, horrified)

Attorney: And, um, I'm sure he is not capable of that. Have you thought about who you'd want to---

Bob: HEY YOU! FUCKED ME UP! OK? FUCKED ME UP!

Attorney: (Looks at Bob, shakes his head, then to me) Is he, um, able to sign a legal document?

Me (thinking, Jeepers!) Sure. He signs all his own paperwork.

Attorney: But, does he understand what he's signing?

Me: Oh sure. He does have some trouble reading, but if I explain things to him. Or read it to him. He understands. I'm certain.

Bob:  HEY YOU, THEY FUCKED ME UP! OK?

And I cringe.

And then Bob starts crying. Literally. Tears flowing down his checks. And he keeps repeating, "fucked me up, fucked me up, fucked me up..."

So I go to Bob's side and grab his hand and try to comfort him, telling him that the attorney already understands what happened and now we are talking about legal paperwork. But Bob is red faced and crying and I hate to admit, I got tears in my eyes, too.

The attorney says, "Well, um, I'm sure this has been really hard for you both."

Then I ask Bob if he understands the paperwork he signs, and Bob, though his tears, nods "yes". And I look at the attorney and say, "See? He understands."

Attorney: Robert, can I ask you a question?

Bob: (nods)

Attorney: Who is the President of the United States?

Bob:  (looks confused)

Attorney: Who is the President of the United States?

Bob: Um, C. and... um, N. G. J?

Me: Bob, he wants you to tell him the name of the President of the United States.

Bob:  Well, duh! You know.

Me:  Yes, I know. But he wants to know if you know. Who is the president? What's his name?

Bob:  Um, C..... and um, N. and J?

Me:  Come on, you voted for him. Remember, O--  (I give him the first syllable, because sometimes that jars his word recall.)

Bob: N? C?

At which point, the attorney starts talking about the need for a court appointed "legal guardian" as Bob doesn't seem competent...

At which point, I tell him I do think him competent, he just has expressive aphasia and can't find the right words. But I'm sure he understands everything that's going on.

I can tell this attorney is really, really doubting me.

So I mention that our malpractice attorney had been talking about doing some "cognitive testing" but it hasn't been done yet. Which is basically where we ended this meeting. With the need to do cognitive testing....

When the attorney left, I turned to Bob and said, "What the heck was that all about?"

Bob: What?

Me: All that "fuck me up stuff," I'm sure that guy thinks you're a complete retard, now.

Bob: (looking horrified)  Sorry.

Me: You're not usually like that. What happened?

Bob: (jabs his finger to his forehead) Stupid.

Me:  Who is the President of the United States?

Bob: Obama.

Me: Jeepers! Why didn't you say that to him???

Bob: I don't know.

All righty.

And I still haven't figured what happened. Except that maybe Bob got confused because the attorney was out of his line of vision and wasn't sure the attorney had heard him the first time, or he perseverated and the "fucked me up" phrase just got stuck in a loop in his mind which sometimes happens or he thought this guy was with the defense or he just got emotionally wound up thinking about that night in ICU or...... what?

But I guess we have some cognitive testing in our future....

Jeepers. I do hope he can pass the test...