A Two Year Caring Anniversary

Bob, one month after being discharged from the hospital.

Today marks two years since Bob was discharged from the hospital. He came home a broken man. Severely disabled and in uncontrolled pain.

He came home able to say only a few words, such as "radio" or "window" and these words he repeated over and over and over again.

He came home weighing 145 lbs, a mere shadow of his former self.

Two years ago, I spent the week between Christmas and New Years fighting with the staff at the Acute Rehab Hospital. They were not going to allow me to take Bob home. The physiatrist (rehab doctor) pulled me aside, sat me down on the chair in the hospital hallway, and told me, in no uncertain terms, that I needed to understand this: "your husband is nursing home material, he will never be going home."

In my heart, I knew this wasn't true. Not Bob. And in my heart, I knew that sending him to a nursing home would be a death sentence. I felt I must get him out of the dirty medical facility environment as Bob continued to come down with infection after infection and already had dealt with two bouts of pneumonia and spent most of the time in "quarantine". But most importantly, I must get him to a pain management specialist to control his pain, and I must also get him to see his other regular doctors because I did not like this new mix of drugs the hospital had put him on.... and, too, I felt that I could take better care of him than any nursing home. But no one was listening to me.

The social worker at the hospital actually lined up a nursing home and had the coordinator meet with me at the hospital to begin Bob's admission process. This meeting was arranged behind my back. I felt defeated. Cornered. I did talk to the nursing home admissions coordinator. I asked her questions, such as what do they do for pain management? (Answer: pretty much nothing but keep him on the drugs he's already on) and how much therapy would he get? (Answer: 15 minutes a day, if lucky.)

I felt like I would have to figure out a way to smuggle Bob out the hospital, kidnap him in the middle of the night, sneak him out the back door, before they sent him away.

Bob, today.

Then, the nursing home called and said they had ran Bob's insurance through and now needed a co-pay of $3000.00. I told them, sorry, I didn't have the money. So the hospital was forced to discharge Bob home. They were not happy about it.

The therapists, at first, refused to train me on how to transfer Bob with a slide board. They told me that I was crazy, that it required two people to lift Bob from bed to wheelchair. They ordered a hoyer lift to be sent to our house. I cancelled the order and insisted they teach me how to use a slide board.

The rehab doctor pulled me aside again and also told me, in so many words, that I was crazy. She said she was certain that I would be calling her up within a month asking for a referral to a nursing home. She said that I would never be able to "handle it". That she could not condone my decision because Bob was "too frail" and "medically unstable".

Then, one of the nurses pulled me aside and whispered that, though no one could say it out loud, the nursing staff was on my side. She said, she knew I was making the right decision. She said that I was right, Bob would only decline if he went to a nursing home.

And when I pushed his wheelchair out of that hospital, the ladies who volunteered at the front desk actually stood up and clapped.

That was two years ago. On New Year's Eve.

And it has been one long damn two years. Two years of caring for Bob 24/7. Without a vacation, weekend or holiday off... Heck, two years without a decent night's sleep! But also two years without a single hospitalization or infection, and Bob has gained back all of his weight and is happier and healthier than ever. And he loves being home.

And I wouldn't have it any other way.

Happy New Year

I swear, This doctor is trying to kill me

So, I think I have it all set up. I contacted the insurance company and got an approval for a home health care nurse to come to our house weekly to draw Bob's blood. Then yesterday, I get a call from the insurance company telling me that the doctor refuses to sign the necessary paperwork and Bob's home draws are, therefore, cancelled.

I'm thinking, what the f---? So I call the doctor's office and talk to the nurse who tells me this decision was made by The Big Guy, I mean, The Big Kahuna, the doctor who owns the clinic, the Big Cheese. It's this pompous ass, excuse my French, who declined to sign the order.

The reason for this is, The Big Cheese says, that Bob is "too mobile" and, um, "too healthy", and (get this) "able enough" to get himself to the clinic to have his blood drawn every week. And therefore, Bob isn't "allowed" to have home health care.

I am sorry, but I about went through the roof! Because who does this hifalutin, pretentious jerk-off of a doctor think he is? God? And just how the hell does he think Bob is "able enough" to get to a lab? Weekly, mind you. And doesn't he realize that the only way Bob gets anywhere is if I push him there in his wheelchair? And is this arrogant, egotistcal, self-important bunghole of a doctor going to come to my house in his red freaking Ferrari and pick up Bob and take him to the clinic for me? (And yes, I am using my thesaurus today.) And, mind you, the clinic this overblown dickhead of a doctor wants Bob to go to is his clinic, so he can line his already overfilled pockets with more cash.

And jeepers, everyday I get out of bed with an aching back and sore legs and I am tired. I tell you, I am bone weary and near exhaustion with what I already do and this pinhead of a doctor wants to add pushing Bob to a clinic for a weekly blood draw to my already overwhelming list of chores?

Bob's regular doctor is on vacation until next week. I tell you, I will have to get on the phone and get a hold of that guy and if he insists on backing up The Big Cheese, there will be carnage. Mark my words.

Because, I tell you, this little girl is pissed! What a way to start off the New Year.







(PS: Phew! That felt really good! Just to get that off my chest.)

The Plumber and The Bowel Movement, A (sort of) Christmas Story

'Twas the week before Christmas

I stepped through the bathroom door

And saw the toilet was leaking

All over the floor.

So I flew to the kitchen

And grabbed the phone book

And called up a plumber

To come take a look.

The plumber arrived,

He was no jolly elf,

He plunked down his tool box

On top of my shelf.

He got down on his knees

Right there on the floor

And examined the toilet

For five minutes or more.

"Ah ha!" He exclaimed,

"This thing-a-bob is busted!

These gaskets are cracked!

And the screws are all rusted!"

"And this little gizmo

It needs some tweaking

If I fix all of that

It will surely stop leaking."

"The good news," he said,

"I can fix it in a flash,

The bad news: it will cost you

Three hundred cash."

Jeepers, oh lordy,

Good grief and oh my!

But I told him to fix it,

Though I thought I might cry.

Then from the other room,

I heard a big clatter,

And went over to Bob

To see what was the matter.

 And there to my horror,

Quite literally, Oh shit!

I grabbed my latex gloves

And my clean-up-Bob kit.

Now this was embarrassing

With a plumber in the house.

So I cleaned him up quietly

As quiet as a mouse.

Then from the hallway,

I heard the bathroom door close,

And when the plumber came out

He was holding his nose.

I stood there before him

in all my poop-smeared glory

I'm sure that the scene

was really quite gory.

He said, "I don't know how you do it,

I don't think I could.

My wife couldn't do it,

Though I hope that she would."

  

Then I scooped up the mess,

And took it out to the trash

The plumber handed me an invoice

That read: 250 cash.

I thanked him that dear plumber,

I thanked him again

And got out my checkbook

And picked up my pen

Then he said, "What the heck,

It’s the Holiday Season,

Make out that check

For 200 even."

So I started to write,

But he stopped me again,

And said, "Just give me 150"

And I put down my pen.

And hugged that dear plumber

I hugged him profusely,

I hugged him real tightly

Then I hugged him quite loosely

He got into this truck

And as he drove away

And I heard him proclaim

“Have a Happy Holiday!”

So if you need plumber

But the price needs improvement

Just invite Bob over

To have a bowel movement.

The End

That, my friends, is a true story.

Merry Christmas from all of us at The Pink House on the Corner!

Phone calls, paperwork, phone calls, paperwork, phone calls.....and then you get stuck in the elevator....

The other day, I told Bob he needed a Business Manager. Seems like all I've been doing this past week is filling out paperwork and making umpteen phone calls and there's no time for anything else.

It's bad enough having to switch Bob's Medicare Plan over to another company because of the big dispute between the hospital and United Health Care (and yes, still no rehab for Bob, so much for "continuation of care") but slogging through those multiple different plans, Medicare A B C and D, and if you've ever done that, you know what I mean. It's confusing as all get-out to me, especially when your dealing with seven different doctors and 16 different prescriptions and you need to find a plan that covers them all... And our government expects our elderly population to figure this stuff out? I finally got him signed up with a Blue Cross plan, only to find out this week that the lab they use does not do home draws.

Now Bob has been having a home draw weekly. This is where a lab technician comes to the house and draws his blood for testing. I guess I've gotten pampered by this service, because I just cannot imagine carting him off to a lab once week, arranging for transport and all that involves, wasting an entire afternoon for a procedure that takes about 5 minutes... And you know, the transport company will not wait at the door for you. They have to drop you off and come back later, with another "45 minute pick up window". Which is why such a trip will take all over afternoon. Not to mention the expense of the transport ride.

So I spent a good deal of time trying to figure a way out of this situation and keep our home draws coming. I was told, at first, the only way to get a home draw was to use an "out of network" lab and that meant paying a 40% co-pay (figure about $36.00/weekly) which we just cannot afford. Our home draws right now are free. So after making many phone calls, someone suggested to call a home health agency who may be able to send a nurse out to do a home draw.

Now, home health care has a zero co-pay, so this is a good idea. I call and get it all arranged, except I have to now get a doctor's prescription/referral to the agency. So Bob and I go to see his primary care doctor, who that day has an emergency and is out of the office, and we have to see a substitute doctor, who I ask for the prescription for home health care and also a referral to get Bob back into Rehab with the new insurance after the first of the year.

Afterward, I have to go to the referral department to pick up the paperwork, but lo and behold, she's only got the order for rehab not home health care. So after waiting and waiting, and Bob getting very antsy, finally a nurse comes out and tells me that she cancelled the referral because they cannot refer Bob to home health care because he is "too mobile". She says if he can get to Outpatient Rehab and he can get to a doctor's appointment, he does not qualify for home care.

I can't believe it. Is she nuts? I tell her to look at him, look at Bob, for crying out loud, the only reason he is sitting in that office is because I hauled him there and we took the wheelchair transport, and the only reason he will get to Outpatient Rehab is because I will push him there, six whole blocks mind you, but no, she says, the insurance will not approve home care for someone as "mobile" as Bob. So, I say, what am I supposed to do? She says, take him weekly for lab draws. (Easy for her to say. Is she trying to kill me? Maybe she'd like to come pick him up? And bring him home?) Or, she says, call the insurance company.

We leave the doctor's office, and I am very upset, and we're rushing to get to the transport on time, and then, just then, Bob's wheelchair front wheel gets stuck in the elevator door. You know, the little open space on the floor where the elevator door closes? His front wheel gets stuck in that, and I'm trying to pushing him through and damn doors are closing on us! GA! So here we are, both Bob and I screaming "Help!" and finally a security guard comes to the rescue. The guard has the gaul to tell me to "back the wheelchair" into the elevator from now on, then I wont have this problem, but um, the reason he's coming out front forward is because I backed him in upstairs and there was no room in this tiny elevator to turn the chair around.... grrr...

So the next day, I am back on the phone with the insurance company for nearly two hours, talking to various people, because no one seems to know the answer to my problem. Finally, I do get connected to someone who tells me that if the doctor orders a home draw from home health care and rehab, well that's the doctor's discretion (not the nurse's) and they will cover it.... Jeepers, and thank-you-very-much, and I hope she is right. So, I finally get it all set in motion, a home care account set up for Bob and request for referral sent to the doctor and I call that nurse who put a kabosh on the home care referral and tell the insurance says we can do this....and we'll see what happens after the 1st....

And I won't even tell you about-- how I've been trying order a new mattress overlay for Bob's bed and having been trying to order this darn thing since September. He needs the overlay to prevent bedsores, but his bed is a "tall" hospital bed and no one seems to carry a "tall" overlay, or I should say, the companies that take his insurance do not seem to carry the "tall" overlay. Every time I think I've found the right overlay, they either deliver one the wrong size and I have to send it back or they call me to tell me there some darn reason they cannot get it in. I am on my sixth medical supply company, who is now trying to special order one for us....

Or about spending a week filling out government "recertification" forms for the end of the year...

Or about trying to order some medical supplies on-line and the "checkout" keeps telling me my zip code is wrong and throwing me back into my "shopping cart"...

Or about trying to e-mail some attachments to the attorney and my browser keeps failing...

Or that I still need to fill out a new financial aid application for 2013 so that Bob's rehab co-pays will be hopefully covered again...

And add all this on top of what I normally do. And everyone else is out there preparing for the holidays, while I'm just trying to keep Bob's care continuing into the New Year.

I will tell you this: I need a raise! ha! And a new job title. "Caregiver" just doesn't cut it. How about Care Coordinator? Or Medical Manager? Or Master Juggler of the Universe? Or.... ? Any ideas?

And--- We're Off!

Yesterday, the hospital was served with a "90 Day Notice of Intent to Sue". This legal document is about 65 pages long and outlines our case against the hospital, describes the events of that fateful night and includes affidavits of two expert witnesses, one of which is an ICU nurse who testifies to the negligence of the ICU nurses; the other is a vascular surgeon who testifies that if the nurse had notified a doctor at the onset of Bob's stroke symptoms (instead of 11 hours later) and if Bob had been taken back to surgery within 1-2 hours (instead of 12-13 hours later) that Bob would not have suffered any "long-term neurological deficits".

At this time, the hospital has 90 days to respond, at which point they can agree to proceed to a settlement, or they can deny any wrongdoing and the lawsuit will be formally filed and we will proceed to a jury trial.

All I can say is, phew! It's taken a long time, not to mention more than a few frazzled nerves on my part, to get this far and I am glad the gate is finally open, the ball is finally rolling.

Bob with Zenith riding on his shoulder

But I must say I have been a basket of mixed emotions. Relief, for one, that this attorney is on top of things.
Proud, of myself, for not giving up when prospects looked grim. Excited at the prospect of a settlement and having some light at the end of this dark tunnel and the possibility of being able to get Bob the help/therapy that he needs... But more than a little angry that this ever had to happen, when it could have so easily been averted. And, alas, very saddened by the whole thing.  What I wouldn't give to just hit the "undo" button.

I was asked by the attorney's office to gather together some photographs of Bob, both pre-stroke and post-stroke, and that has been a gut-wrenching task, to say the least. Some of the pre-stroke photos are just so hard for me to look at without bursting into tears. Like the one above...

Bob Speaks Out: A Video, Part 3

I haven't posted a video of Bob speaking in quite awhile as I had problems with my camera, but finally,  here is a video I took yesterday: (Click on the YouTube icon if you have technical difficulties with the videos. This will take you right to YouTube for better sound and picture quality.)

.

Compare to this one, taken 9 months ago:

Improvements all around, I think. Not to mention---man, did his hair grow! ha!

Since around June, when the last "professional" Speech Therapist bailed out, we have not had the time to do any "traditional" speech therapy. We used to do about 45 minutes each day, but since Bob developed his neck issues, we spend that time now doing neck stretching exercises and PT...  Instead, I have been implementing Mark Ittleman's "Teaching of Talking" techniques, which is basically pushing Bob to speak in complete sentences all day long. A sort of slipping speech therapy in sideways, if you will.

All I can say, it seems to be working.

Meanwhile, still no word if he will be able to continue at Rehab...... aargh.

Wouldn't It Be Lovely...?

Yesterday, Bob and I met with a rehabilitation consultant. This fellow was flown in from Miami by our attorney and the meeting was held at Bob's bedside here at The Pink House.

I was told that the purpose of the meeting was to prepare a "life plan assessment" for Bob, i.e. what Bob would require for life-long care. I was under the impression that the rehab consultant would be doing a physical assessment, testing Bob's mobility etc., but it turned out to be just an hour and half long question & answer interview.

The consultant explained that a medical malpractice suit is broken down into two parts. The first part is to prove that negligence occurred and that negligence indeed caused damage to the patient. The second part is the settlement which includes such things as "pain and suffering", medical expenses, loss of income and quality of life issues. And he was here to determine the medical expenses and quality of life part of that second part. From our interview, he is to write a 45-50 page report, a sort of life-long care plan for Bob. His report will then be given to an economist who will put a dollar amount on the whole shebang.

Count me as a bit naive, but I figured "medical expenses" would entail such things as the cost of Depends, prescription and doctor co-pays, and the cost of taking the wheelchair transport, etc. Things we pay out-of-pocket for now. Imagine my surprise when he came up with a list that included the following:

a wheelchair lift van of our own

a power wheelchair with left hand controls

and a 24/7 live-in paid caregiver

When he mentioned the live-in caregiver, I said, where the heck do we put her? Because you know, The Pink House is a small, 2 bedroom bungalow and we are really crammed for space...

and that's when he said, he is also listing a bigger, single story, wheelchair accessible house with all the wheelchair accommodations such a wheelchair accessible bathroom...

then he went on, to add such things as:

at least twice a week, ongoing, year-round physical therapy

specialized intensive aphasia therapy programs (there is a "good one" he said in Illinois)

adaptive computer equipment and aphasia computer programs to help with speaking

cognitive therapy

music therapy

art therapy

and I can't even remember what else he said, because I was pretty flabbergasted over the whole thing.

Of course, I know, right now this is all a pipe dream. A sort of wish list to present to a jury, if and when we get that far--and who knows what will happen. The attorney warned me these things can take years and years before they are settled. And the attorney is still lining things up, getting our ducks in a row, doing the pre-investigation and hasn't even filed the lawsuit yet.

But right now, all I can think is----  Wouldn't it be lovely? Oh my.

Meanwhile, still no word if Bob can continue his therapy at Rehab... and thank you for all the comments on Bob's drawing. He really got a kick out of it! If you haven't already left one for him, please do!

Privileges Revoked

Yesterday, I called Outpatient Rehab to find out if the paperwork had been cleared for Bob to continue therapy and was told that his "privileges were revoked" by the financial aid office.

This is not because of anything Bob or I have done. This is because the hospital is fighting with United Health Care over unpaid claims and thus, all United Health Care enrollees are having their "privilege" to financial aid revoked.

Today, an appeal is going to the Chief Financial Officer in charge of the financial aid program to see if he/she will grant an exception for Bob.

All I can say is good grief. And I can't believe it. And here is just one more reason this country needs a universal health care system.

A River of Vodka, A River of Tears

Here's Bob's latest drawing which he calls: "A River of Vodka"

A RIVER OF VODKA
by
Bob
(click to enlarge)

He has been working on this one since summer and today pronounced it "done" but I could tell something was not right, so I asked him, "What's wrong?" At which point, he pointed to the drawing and announced, "Sucks!"

When I told him that I did not think this drawing "sucked", that in fact, it was darn good for someone who was formerly right-handed and now drawing with his left hand, and I loved the title and thought the drawing was pretty cool, he just rolled his eyes.

So I guess he's not happy with this drawing. But it's good know his artistic "inner critic" is still alive and kicking.

Bob usually spends his mornings drawing, but this past week he has been dealing with bouts of depression. Some mornings I find him crying a river of tears, when I ask him what's wrong, he says, "I'm sad" and when I ask him why, he just points to his paralyzed arm, leg and mouth and says, "Gone." I have been worried about him. And of course, his mood deeply affects mine (see my previous rather pathetic post, ha!). And yes, he is taking medication.... and I don't know what else to do.

I do hope it's just a passing phase. We have been dealt some blows lately. The dismal swallow test, for one. Plus this past week, Rehab cancelled both of his appointments because of a paperwork problem, which I hope will be cleared up soon and pray that this does not mean there is a problem with his financial aid. I do know that Bob loves going to Rehab and it's been a big disappointment for him not to go this week.

Meanwhile, if anyone out there thinks this new drawing doesn't "suck", I'm sure Bob would be cheered to hear that! Leave a comment and I'll pass it along.

Grocery Store Blues

Yesterday, Chris came over to sit with Bob so I could run some errands. I had to return a pair of shoes that I bought for Bob (which didn't fit) to a store on the other side of town and on my way back I stopped at a grocery store to pick up a few things.

Now this store is a bit out of the way, but I know it well as Bob and I used to shop there frequently pre-stroke. They have, for one thing, a great meat/seafood department with the best fresh shrimp and always good deals on things like poultry. In those days, I loved to cook and Bob loved to eat. It's been awhile since I had been to that store.

Last week, Bob had another swallow video test which, unfortunately, showed no improvement from his last one a year ago. I must admit I wasn't holding my breath, because, truly I have not seen any improvement in his swallow and he still complains that his right cheek and right side of his tongue and throat are "gone" meaning numb, with no feeling or movement. And it seems to me that his feeding tube is no longer a "temporary" thing.

Anyway, I walked into that grocery store, which was decorated for Christmas and the Christmas music was playing and a couple entered behind me, laughing and talking.  I grabbed a cart then stopped to take off my sunglasses by the pharmacy, where Bob used to fill his prescriptions and suddenly, quite suddenly, tears welled up in my eyes as all these memories flooded over me.

So there I was, between the pharmacy and the "special sales" aisle, as I fought back the tears and fumbled to extract my shopping list from my purse.  And such a pathetic shopping list it is, like a single girl's, consisting of cat food and ready-to-eat meals. I remembered when I used to arrive there, with Bob, and a long list of ingredients for the recipes he loved, like my special meatloaf and creamy ranch chicken and shrimp scampi with pasta...

Some days, I tell you, it is just so hard to look back and remember everything we've lost.

But for those of you who love to cook and are lucky to have mouths to feed, I'd like to share one of Bob's old favorites. He won't be enjoying it anytime soon, but perhaps someone else will.

Creamy Ranch Chicken

6 slices of bacon

3 skinless chicken breasts, boned and cut into chunks

2 Tablespoons all purpose flour

1 packet dry ranch dip

1 1/4 cup milk

egg noodles (or other pasta)

shredded cheese (any kind)

Cook pasta, drain. Meanwhile, fry bacon, remove from pan. In same pan (pour off excessive bacon grease, but leave a small amount --enough to coat bottom of pan), cook chicken until done. Sprinkle with flour and dry ranch dip. Stir in milk. Cook and continue stirring until bubbly. Add bacon--crumbled. Serve over pasta, sprinkle with cheese.

Enjoy!

Do It Yourself Catheterization: Learning by The Seat of My Pants

When someone once told me that I would "make a good nurse",  I tell you, I nearly laughed out loud.

For certainly, nursing not the type of work I am cut out for as I will be the first to admit that I am extremely squeamish about such things as bodily functions. Case in point: one day, last month, when Bob had a particularly nasty bowel movement, I ended up fleeing out the back door, dropping to my knees, gasping for breath and trying not to puke all over the wheelchair ramp. You'd think I'd have gotten used to this by now. But alas, I have not.

Finally that day, I collected myself and walked back into the house where the smell alone sent me flying back out the door, all the while screeching at the top of my lungs, "I'm sorry, sweetheart! But I cannot do this!!!"  There I sat outside, gulping down the fresh air considering my options which were, um, call 911 and ask them if someone please could come over and clean up my husband because, lord almighty, I just can't do it.... Or leave him lying in that putrid mess for all of eternity... Or get in the car and just drive away from the horror of it all... Or, get a grip, Diane, go back in there and face it like a man--er face it like a nurse! Which is exactly what I had to do, and it wasn't pretty--

But I digress from the topic of this post which is another nurse type job I have recently acquired: i.e. Intermittent Catheterization.

Intermittent catheterization is just that, a way to temporarily catheterize a patient (i.e. Bob) when he can't pee. I had toyed around with this idea in the past, especially on those days when Bob spends 3-4 hours trying to pee, but the mere thought of taking a rubber tube and sticking it you-know-where sent shivers down my spine. So I kept hoping, against hope, that this little problem would clear itself up. Unfortunately, it hasn't.

It wasn't until last month when I had to take Bob to the urologist, once again, to have him catheterized for a urine sample for Pain Management because, once again, he could not pee while at Pain Management, that I asked the urologist if he could show me the technique. My thought being if I can do it myself, it will save us forty bucks next time Bob can't pee at Pain Management. Plus it may come in handy on other occasions.

The doctor sent his nurse in with an intermittent catheterization kit to give me a quick lesson. First, the nurse showed me how to sterilize the tip of Bob's penis, then she draped his lap with various blue disposable pads, and I'm thinking, oh boy, this is going to be messy. She brought out a tube of lubricant and a gauze pad and squeezed a big glob of K-Y type jelly out onto the pad. Then she brought out the catheter.

I swear I nearly fainted because that catheter looked like it was TWO MILES LONG and I couldn't believe she was going to be inserting that thing into Bob.

Of course, I exaggerate. The tube itself is about 16 inches long, but still...  I could feel myself beginning to turn green at the gills as the nurse sort of rolled the end of the catheter in the K-Y jelly, telling me to keep the tip of the catheter pointed at Bob's nose. Then she stuck that thing in him and told me to guide it through to "get the feel of it". Which I did.

All the while holding my breath, because that tube just kept going in and in, and I kept stopping because it really seemed too much, I mean, jeepers, how much of this hose can I stuff in there?--at which point the nurse would tell me to keep pushing it in because, she said, the trick here is you do not stop shoving that thing in until you see the urine start to flow.

Finally, after what seemed 100 years and miles of hose, the urine did flow. And when it stopped, the nurse had me glide the long tube back out. And when it came out, out flowed from Bob more pee plus some crunchy looking pee sediment all over the blue pads. The whole scene, to me, was really quite horrifying and I felt as though I was watching it from outside of my body, like a person in shock or a near death experience. I was beginning to think I'd bitten off more than I could chew with this one. As the nurse happily cleaned up the mess, I asked her about the crunchy bits and she said that it was quite normal and was called, um, something which I don't remember but surely is the medical term for "crunchy looking pee sediment."

So that was my lesson and the nurse told me I did a good job, and she left me armed with 5 sample catheters, written instructions and a tube of jelly and said she'd be faxing off a prescription to a medical supply company for more. I, of course, left that office praying I would never ever have to do this on my own.

And for a few days, I lucked out. Bob was peeing just fine.

Then came the fateful day when Bob could not pee. So I got out the catheter, jelly, and quickly re-read the written instructions. I inserted the tube and things were going quite well until that tube sort of just stopped gliding. I mean, it wouldn't go in any further and there was no urine flow and I'm thinking, what the hell? Because this isn't right. So I try gently moving the tube around, thinking it's taken a wrong turn, gone the wrong way, hit a brick wall---but still the tube won't budge and Bob begins to make noises that I'm hurting him, so I start to back the tube out when the urine does begin to flow, but NOT into the tube. The urine is actually flowing outside of the tube. I mean, basically, Bob is peeing down the sides of the tube, and pee is running all over my fingers, and GA! on the bed and everywhere but in that damn tube where it's supposed to be. Quickly, I pull the tube out and get the urinal to catch the rest. But I tell you, I had one mess on my hands (not to mention that Bob was quite upset) and had to change not only Bob's clothes but all the sheets on the bed to boot.

By now, I'm thinking I need a "refresher course" so I look up and watch every darn video I can find on the internet on intermittent catheterization. Still, I cannot figure out what I did wrong and am really dreading trying it again

Meanwhile, I get a call from the catheter company telling me that they received the order for Bob's catheters and are faxing it to a local medical supply house. She asks me how many catheters I have and when I tell her "four" she says she'll send me ten more free samples to "hold you over" until the order is processed. Before the box of samples even hits the door, a sales rep from the medical supply company calls regarding Bob's order. And he will not talk to me.

It's not the first time this has happened.

The rep insists on speaking with "Robert" because this is a "private matter" regarding medical supplies.

In fact, he won't even confirm that this is the order for catheters when I ask him. Even when I tell him that Bob had a stroke and has aphasia and is not going to be able to "talk" to him etc. and that I am his wife... he still insists on speaking with Bob. Finally, I tell him Bob can answer "yes" and "no" questions and if I put Bob on the phone, can you ask him if it's OK to speak to me? The rep agrees.

So, I put Bob on the phone. Bob says "yes" and hands the phone back to me and the rep tells me that he has an order for 30 catheters per month. I tell him I don't believe I'll be needing quite that many, and he asks how many do I need? I tell him that I'm not sure, we just started doing this, but maybe only ten a month and by the way, how much do they cost? He says our co-pay is 20%. I ask how much is that? He says he doesn't know, but it's 20% of the total cost. So, I ask, well, how much is the "total cost"? He tells me he "doesn't know" but he is sure that "ten will cost less than 30".

Well, duh.

I tell you, the medical field is the only business that can get away with this shit. Making a person order something without even knowing the cost and expecting that you pay for it. But I order ten and they arrive within a few days without an invoice...

And they look different than the ones I got from the nurse. These new catheters are called "Magic Catheters", and each individually wrapped catheter is packaged with a little lubricant pouch. I dig through the box, to see if there are some instructions or something, but there is only a reorder form. Though I think having the lubricant in packets would be handy for traveling, as I won't have to take the big tube of lubricant with us. So, I stuff one of the new "Magic" caths into Bob's backpack.

For a few more days, I remain rather lucky, not having to cath Bob. In fact, on a couple of those days he does some trouble peeing, but all I have to do is ask him if I should get out the catheter kit--which immediately elicits a look of horror on Bob's face after which, he immediately pees. Perhaps out of fright.

The second time I attempted the intermittent catheterization was last week in the locker room at Rehab. Bob just could not go, so I mentioned the "tube" and he actually agreed to let me try it. This was one of the new "Magic" catheters. So I take out the foil lubricant packet and attempt to open it. Attempt is the key word here, because the foil packet just will not tear open. Finally, though, after enough attempts and much cursing, I manage to tear off the end, but when I pour the lubricant out it's like liquid, not jelly at all. I'm thinking this is really weird. But I manage to  get some lubricant on the tip of the catheter, and I put the tail of the catheter in the urinal and then attempt to slide the cath into Bob. Attempt again, a key word. Because the darn thing is not going in very easy. In fact, it's like pushing the proverbial square peg in the round hole. And now I wish I had one of the other catheters with me, the kind the nurse gave me, because this "magic" catheter is way too bendy and the lubricant certainly sucks... and this not working at all.

Finally, I get it the darn thing in, but when I try to push it further, the head of Bob's penis sort of blanches white, then turns a strange GREEN color. Which, of course, totally freaks me out. So I take the catheter out, re-lubricate it with what's left in the foil packet and try again. Same results. Except now the head of his penis is not only turning GREEN, but the GREEN is turning PURPLE! GA! And Bob is literally screaming in pain. Horrified, I pull the thing out. So forget it. I'm all shook up and I give up, and poor Bob has to go to his Rehab appointment with a full bladder.

After Rehab, he still can't pee. We get home, and he still can't pee. I get back on the computer to watch more intermittent catheterization videos (fun fun) because I am evidently doing something terribly wrong. Like holding the penis at the wrong angle? or What? I finally watch one video with a nurse who mentions to lubricate the tip of the catheter a full two inches. So I think, OK, maybe that's it.

I get out the "old faithful" catheters that the nurse gave me and the tube of jelly. Now this is my third attempt at intermittent catheterization. The thing glides in easily enough and it keeps going and going and I'm thinking, Bob should be peeing by now, but I don't see a thing. So I keep gliding it in, deeper and deeper and suddenly Bob cries out in pain. So I pull the thing back out. And honest-to-God, I cannot figure out what I am doing wrong. And I'm about to give up totally on this whole catheterization idea, when I look down into the urinal and find---it's full of urine! Whoo hoo!  I did it!!!! And didn't even realize it.

Just yesterday, I finally opened the box of "free samples" that the catheterization company sent me. I was hoping, really hoping, it was the "old faithful" type of catheter in there, but to my chagrin, the box is filled with more "Magic" catheters . So I took them out of the box and was about to put them away when I noticed some papers at the bottom of the box and, lo and behold, there is an instruction pamphlet. What a concept! So I sit down and read it.

I find out, these "Magic" catheters are something called a "Hydrophilic" catheter. I had never heard of such a thing. The instructions inform me: This catheter becomes slippery when wetting with water, eliminating the need for a separate lubricant. For your added convenience, this catheter is packaged with its own sterile water. Simply release the water from the foil packet and then tip the un-opened catheter package end-to-end. The catheter acts like a magnet to attract the water and activate its slippery coating.

Oh dear god. Well, that explains a lot.

So now I am armed with instructions. Wish me luck.

"I Win!"

Which is exactly what Bob said, when I told him the charity board approved the funding for his continued therapy. Right now, he is scheduled for three more weeks of therapy, six sessions, all paid for by the hospital.

Bob working out on the NuStep

I am not sure if they will continue to pay for the therapy after the three weeks, six sessions, are completed....

So still holding my breath a little there.

But I am relieved and feeling blessed to have gotten this extension for him.

Walking the rail at Rehab

                                           

Yesterday, Bob walked with the therapist

at the railing in the hall at the Rehab Center. It's 20 feet long

and Bob made the trip 9 times, so that's

180 feet!

So we have things to be thankful for

this Thanksgiving.

And a Happy Thanksgiving to all of you from all of us here at The Pink House on The Corner.

Progress at Rehab! But...

Don't you just hate that word: "but..."?

When Bob started Outpatient Rehab back in August, he couldn't stand at the parallel bars without two therapists holding him up in a big bear hug, like this

Bob at the parallel bars in August

Plus, he could not hold his head up at all and was leaning horribly to the left.

First time with the hemi-walker.

Since then, he has gradually progressed to working with one single therapist.

The first time up on the hemi-walker, he was literally falling over backward and the therapist was holding him up like this:

This past week, Bob had another 4 week evaluation. At that time, he was able to walk 160 feet at the parallel bars unassisted and without hardly leaning to the left at all. And he stood with the hemi-walker for a total of 1 minute and 30 seconds unassisted. And the therapist measured his head drop which has improved dramatically by several degrees and he is now able to hold his head up for the count of 15 in a perfectly "neutral" position unassisted....

The therapists say they are very pleased with his progress, but.... (there's that damn word, but..)

But they are telling me that the insurance will not pay for more than 30 sessions of therapy, and next Tuesday will be Session Number 30. So they are preparing to discharge him.

So I asked if there was any way around this, because, according to Bob's medicare plan, therapy is "unlimited" as long as it's "medically necessary". But (there's that word again) I am told that even so, after 30 sessions this insurance company will scrutinize the progress Bob has made and because he has not become truly "functional" (another word I hate) they may actually go back and deny coverage of past sessions. And, of course, the PT was very very sorry about all this, but that's the way the system works and they, the Outpatient Rehab Center, cannot take the chance of having past sessions not covered by the insurance. 

The PT did say she felt very bad especially since she knew how motivated Bob was in his therapy and how very well he was doing, so she asked the Management if it would be at all possible if I could bring Bob to their Rehab Center so that he could work on the equipment without a therapist. She didn't know if this was possible, probably not because of liability issues, but she did ask and was waiting to hear an answer.

Of course, you can imagine how I felt hearing all this. And how Bob felt, after trying so long and hard. And of course, we cannot afford to pay out-of-pocket for continued therapy.

So I stood there watching the PT work with Bob, and I had an idea. 

I asked her if I could get some more financial aid from the hospital's charity foundation which is already paying Bob's therapy co-pays, if they would agree to pay the whole cost of the therapy sessions, would the Rehab Center be willing to continue the therapy?

And she said, yes. Of course, because they are very pleased with his progress.

So on Friday I called the hospital's financial assistance office and explained the situation to the supervisor there, and she is going to request a "review packet" of Bob's chart from the Rehab Center and then bring the proposal up to the charity foundation board and she'll let me know what they decide. Oh, I do hate to beg for help, but this girl's gotta do what she's gotta do.

So fingers crossed, prayers needed, and maybe, just maybe the board will approve it, and I'll be able to keep him going to therapy. 

If not, I don't know what we will do...  

Honest-to-God, I don't know if Bob will ever be able to take a step with that walker as he is very unstable, but I want to give him the chance and time to try---and I don't think it's something we could safely practice on our own at home with all of his balance issues.

Life's a Beach

My handsome guy!

I did manage to get Bob out to the beach resort where my parents are staying and he had a good time there. We made it out there three times and spent the afternoon.

Though the second time, we were half-way there on the wheelchair transport when I realized that I had forgotten Bob's backpack which contains, among other things that all-important urinal! GA!

What had happened was the transport came early and me, in my mad dash to get him out the door, forgot to strap the backpack on the wheelchair....

And, of course, immediately upon arrival Bob had to pee. So, my mom was scrambling to find something large enough and disposable for Bob to pee in. We ended up using an empty cashew nut can. Which puts a whole new spin on that old phrase "I have to use the can".

Bob with my dad and mom, aunt and uncle, at the beach resort

Then, of course, right before we were about to leave, Bob tells me he thinks he has to poop. Oh shit! quite literally, because guess what else was in the backpack that I forgot? My latex gloves, bath wipes and fresh Depends! Aack!

But we made it home in time.

Thank God.

Today is the last day of their visit and it has been delightful and wonderful to see them. And, as always, I love them and will miss them dearly when they leave. And I am grateful to have such wonderful parents.

Though I must admit, today, I am exhausted.

I think I need a vacation.

Broken Ribs, A Cursed House, Blood Tests & Falling Over Backward

I tell you, this has been some crazy week and I haven't had time to blog, let alone think straight.

My parents, along with my aunt and uncle, are in town for their annual visit--which is an event I do look so forward to--but this year it has been downright stressful.

Immediately after their arrival, my father tripped and fell in the motel parking lot. An ambulance was called, but my dad felt "fine" and they checked him over and left. But the next day, he was not feeling so fine and finally, two days later, he went to the emergency ward and it was discovered he broken a rib.

Then my aunt has decided she will not come to our house because she believes it is cursed.  I kid you not.

This rather bizarre idea stems from an incident last year when my aunt was standing on our front porch and this 19 year old kid (who lived down the block and had been allowing his dog to crap all over my yard, this kid who that very morning when I had confronted him about his dog had threatened to burn my house down), this little punk said something to my aunt as he cockily sauntered by and she truly believes that he "put a curse" on her. And even though this kid no longer lives in our neighborhood, my aunt refuses to come over and visit Bob and me. So if we plan an outing together, my father must drop my aunt off six blocks away, come and pick me up, then go back and get her. And vice versa, when they bring me home: my aunt is left standing six blocks away. Which really cuts down on the time my mom and dad can spend visiting Bob before and after our outings. Not to mention that my aunt has only seen Bob once the whole time they've been here (when I took him up to their motel on the wheelchair transport) and I'm afraid he is feeling a bit neglected. This whole thing is really stressing everyone, including me, out. I wish I knew how to convince her that our house is not cursed, it's our home and we do miss her coming here...

Also this past week, Bob's PT/INR went off the charts. This is the test for blood thickness that he has done monthly to regulate his warfarin (a blood thinner). The results were a 3.7, which is way too thin and can cause internal bleeding. So the primary care doctor told me to take him off the warfarin for two days (always scary) and then have another blood test, and when the results were 1.7 (too thick) the nurse told me to keep Bob off the warfarin and bring him into the office on Monday to see the doctor. This was on Thursday and I just about freaked out because that would mean Bob would be off the blood thinner for six whole days and the neuro doctor said never, ever quit that warfarin because it could cause another stroke. I finally got a hold of the doctor himself, which was no small feat, and he told me put him on 5 mg and have it re-tested on Monday. Now, this week, results are still running too thick (1.4) but the doctor is worried about Bob's ulcer and doesn't want his blood too thin as it could cause the ulcer to bleed. I tell you all this has me a nervous wreak. His next PT/INR will be Monday.

On top of this, every time Bob attempts to get up with that hemi-walker, he topples over backward. He only has three more scheduled Rehab appointments and I am scared too death that will be the end of his therapy. And then, what will we do? On Tuesday, when we were practicing in the hall by the rail, he toppled backward with me and I attempted to pull him up straight with the gait belt and really, seriously bruised myself.

And there's more, but that's all I have to time to write today. I am taking Bob out to the beach motel where my mom and dad and aunt and uncle are staying. And praying for a calm, uneventful day.

Happy Monday!

This morning, I woke up to the sound of rain on the window. The first thing I thought was, well, I can roll over and catch a little more sleep because I won't be taking the dog on a long walk in this weather.

The second thing I thought was, oh yeah, the blood draw guy is coming at 8:30 a.m., so I better get going.

The third thing I thought: today is my birthday.

And I wondered if Bob would remember.

When we were dating, Bob told me that he was glad my birthday was the day after Halloween, because that made it easy to remember. He said he'd never forget my birthday.

My 4th Birthday
My mom made the best cakes!

I don't know why it's so important that Bob remember my birthday. Sometimes I wonder why birthdays are important at all. It is, it seems, just a way to mark the passing of time.

But I suppose a birthday becomes important because birthdays are such a big deal when we are kids. A birthday was like Christmas, but better. Something anticipated year long. Getting older, back then, was great.

Getting older is not so great anymore.... and still, I look at the calendar and anticipate a celebration of sorts.

Yesterday was Halloween. In the morning, I said to Bob, "Today is Halloween."

He said, "Happy Halloween!"

I said, "You know what comes right after Halloween?"

He said, "Christmas!"

All righty. I reminded him it would be my birthday, hoping that he would remember it in the morning.

So, this morning, I asked him, "Do you know what day it is?"

"Monday," he said, matter-of-factly.

"No, it's Thursday. It's the day after Halloween. What's the day after Halloween?"

"Monday," he insisted.

I said, "No, silly, it's my birthday."

"Oh yeah."

I waited for him to say something else.

He didn't say anything.

So, I said, "What do you say when it's someone's birthday?"

"Um..." he says, then, after thinking about it, makes a grand sweeping gesture with his good hand, and proclaims, quite proudly: "Happy Monday!"

Four More Weeks!

The good news at The Pink House is that Bob once again passed his Rehab re-evaluation and was approved for physical therapy through Nov. 20th. OT did discharge him, which is all right by me, as she was truthfully running out of things to do...

This past week, at PT, Bob was able to stand with the hemi-walker for 1 minute and 30 seconds! Without assistance from the therapist. Which is a huge step in the right direction!

Unfortunately, since then, when trying to walk the rail at home, his right leg keeps getting "locked in extension", so when he attempts to get up from the wheelchair, that right knee locks, gets stuck, straight and unbendable as a board (even when I try to bend it), then his right foot slides right out from under him, toes into the air, as though he is kicking upward. At which point, he falls back into the wheelchair.

This only happens when he pushes up from the wheelchair arm, not when he pulls himself up on the rail... Very weird.

But I must hand it to Bob, who keeps trying to get up, even after he falls.

Trouble With That Peg Tube

This will be a long post as Tuesday was a very long day and it all started when Bob's peg tube dislodged and came right out of his stomach.

Of course, this would happen while the night feeding pump was turned on. And of course, Bob didn't even notice it happening, so I found it in the morning when I went to disconnect the pump and Bob told me that his bed was "wet". 

First, I thought he had wet the bed. But when I went to change the bed pad, I found it wasn't wet so much as crunchy and oh lord, that's means a Jevity spill. So immediately I checked the pump connections which were fine, and that's when I noticed the darn peg tube was no longer in Bob's stomach but lying on the bed. GA!

This was a first for me. This was a bit of a shock. In fact, it was downright horrifying.

And I didn't know what to do. And there was no one to call at 6:30 a.m.

So, I checked Bob's belly hole, but it seemed fine, no blood or anything. Bob said he felt fine. I wondered, briefly, should I try to re-insert the tube? But when I looked at the tube, the end that goes into the stomach seemed rather brown and gross and god knows, I might make the whole situation worse, so I gave up that idea. Instead, I set to work cleaning up the mess of Jevity which had poured from the end of the tube all over the bed. Then cleaning up Bob who was also covered with Jevity.

Then I got him dressed as I figured we were going to have to go somewhere to get this tube replaced.

At 9:00 I called the gastro doctor's office but no one was available to talk to except the receptionist who took a message for the nurse.

Meanwhile, I told Bob that we would have to go to the doctor's office and we would have to take the car--which we haven't done in a while. Bob was not pleased with this idea and I must admit, it is difficult getting him into The Green Machine which has old fashion bench seats, but I've done it. It can be done in a pinch. Bob kept telling me, "No. Ride!" And I kept telling him that he couldn't "ride" with the wheelchair transport because they require a 24 hour reservation.... Back and forth we went like this, Bob saying "Ride!", me saying "No, not possible." Then Bob says, "Bus!"

I have taken Bob on the bus before, which is not bad if the trip is not a long one. So, I look up the bus schedules, though this seems a nightmarish solution when one is going to replace a peg tube, and I find that to get to the gastro doctors office we'd have to transfer three different routes and that will take ages...

So we were back to "Ride!" and "No, not possible." And Bob getting pretty upset.

Finally the nurse calls and tells me that Bob's regular doctor is not available, but another doctor is and he wants Bob at the hospital at 1:00 p.m. to replace his peg tube. I'm thinking, oh crap, because I thought it could be done in the doctor's office like the last time Bob's tube was replaced, but she says no, because the old tube has dislodged and he needs to go to the hospital. Now, she's talking about the hospital where Bob had the stroke and I am not too keen on this idea, but what can I do?  She tells me it's only for "a day surgery procedure" and it should take about 2-3 hours. Then he can come home.

I relate all this to Bob who says, "Ride!" 

I then call the wheelchair transport and ask them if they make any exceptions for emergencies and I am told if it's an emergency, I should call an ambulance. I explain our situation, about the peg tube, etc., and the woman is very nice but you know rules are rules and they need a 24 hour notice or  I must "private pay" for the ride. "Private pay" is going to cost $76.00 round trip. Seventy-six dollars! This for a round trip that would normally cost eight bucks.

I tell her I have to think about that one.

She tells me she could discount it to $60.00.

All righty. 

After that, I dig up an old business card that was given to me last year by one of the wheelchair transport drivers who is an independent contractor and takes jobs on the side. I call him and explain the situation, and he tells me he can get us to the hospital but he can't get us back home because he has another commitment. He'd charge me $20.00 one way. But how do we get home? Then he mentions he has a friend in the same business and gives me his number, who I call and get set up for $40.00 round trip.

Finally, at 12:15 we are picked up and I pay the driver $20.00 cash. I tell you, it feels like highway robbery. But we get to hospital on time and Bob is happy because he can "ride"...

At the hospital, Bob is admitted to day surgery. The doctor comes in. This doctor is bald and has a bandaid pasted right on the top of his head and I can't stop looking at it.  He says they are going to do the procedure right there in the day surgery waiting area.  He brings out a new peg tube and I see right away the thing doesn't have a clamp on it. I ask him if he can put a clamp on it before he puts it in. Because the tube he has is one solid piece and it would be impossible to put the clamp on it after it's in Bob's stomach. (I know this because the last tube Bob got, the one that popped out that morning, was the same type of tube and the doctor did not put a clamp on it and I could not get a clamp on it afterwards. Which really made it a pain to use though I did finally manage to jerry-rig a clamp on it.)

He tells me he doesn't know what I'm talking about. Why does it need a clamp? He asks. You just close the port opening, he demonstrates by closing the opening. 

I am thinking, this doctor is an idiot. Doesn't this guy know how these things work? Because the clamp is for when you OPEN the port opening, so stuff doesn't come running out of the tube.

Anyway, he closes the curtain around Bob but immediately comes back out and tells me that Bob's belly hole has closed and he can't get the new tube in so Bob will have to have actual surgery to make a hole in his stomach and then he asks me why didn't I re-insert the old tube after it fell out?

I told him I didn't know if I should do something like that, I was afraid I might make it worse, cause an infection or something and the nurse didn't say a thing about re-inserting it and I had told the nurse that the tube had completely fallen out. And he tells me that really someone should have trained me how to do this....

Then he tells me that he going to admit Bob into the hospital because he wants him taken off the Warfarin (blood thinner) before he does the surgical procedure. And this will take FIVE DAYS, and that's when I really start to freak out.

Because this is THE HOSPITAL that nearly KILLED BOB two years ago. And I am not very comfortable with leaving him alone there. 

Plus, the neuro doctor said to never, ever take Bob off the warfarin because he has a high stroke risk.

So, I tell this doctor this. Um, not the first part about nearly killing Bob but about the neuro doc saying never to go off the warfarin.

And he says, "well, how does he have surgical procedures done then?"

I say, "well, he hasn't had any surgical procedures done since the stroke."

He says he's going to call Bob's primary care doctor and talk to him. 

So we wait. I tell you, I am sick at the thought of leaving Bob at this hospital for five days. I'm thinking, I need to get a new gastro doc for Bob, one that doesn't use this facility, one who knows what a tube clamp is for, one without a bandaid on his head.... but it's sort of late now.

About a half hour later, the gastro doc comes back and says that he has spoken with a colleague of his who has an idea how to do the procedure while Bob is still on warfarin, and they are going to do it now in the GI lab with an endoscopy and some type of attachment to see if they can pry open Bob's belly hole from inside of his stomach. He is not sure if it will work. And if it doesn't work, Bob will have to be admitted to the hospital...

So off we go to the GI lab, where I wait in a room the temperature of a freezer. Part way through, the nurse comes running out of the lab and picks up the phone and tells someone about a "patient with a peg tube replacement and severe gastritis and bleeding" and I'm thinking, oh shit, now what?! And she hangs up the phone and walks right past me so I pipe up and say, "Is anything wrong?"

She says, no, she's just getting a prescription.

By now, I'm quite worried and 20 minutes later the doctor with the bandaid on his head finally comes out and tells me everything went fine but Bob has an ulcer and he's writing a prescription for that. A prescription, which by the way, when I go to get it filled is not covered by the insurance and costs $100.00. 

Finally, we can leave the hospital, Bob outfitted with a shiny new peg tube complete with a clamp.  I pay another ridiculous $20.00 for the ride, and when we get home, I get Bob into his bed and immediately he pees all over the sheets. So I have to get him back out of bed and change the sheets.

I tell you, by the end of the day, I was exhausted.

We skipped Rehab yesterday. Bob not feeling well and that was OK by me. I needed a break.

And today we are off to see the urologist for some more doctorly excitement. Bob has to be catheterized for yet another urine sample for a drug screen for Pain Management. This time, I am going to ask the doctor to teach me how to catheterize Bob so we don't have to keep running to the urologist every time Pain Management wants a cup of pee. I'm thinking to have this skill will come in handy on other occasions as well. Though I do hope I don't pass out. I am already a bit squeamish just thinking about it.

 But at least this trip will only cost $8.00.

Two Year Stroke Anniversary

Two years ago, tonight, our world fell apart.

The two years since have been utterly brutal, exhausting, frustrating, enlightening, and, yes, sometimes absolutely amazing.

Yet, I have often wondered, these past two years, why Bob's recovery has been so slow. I have wondered why he is "behind the pack". Why nearly every other stroke survivor I meet is doing remarkably better than Bob. Why he has never "hit" one of those established stroke recovery timelines.

Why he still has no movement in that right arm or hand or shoulder.

Why he still cannot walk. Or even stand.

Why he still cannot control bowel or bladder.

Why he still cannot speak well.

Or swallow.

Or read well.

Or write.

Or so many other things.

I have wondered what we were doing wrong, if we weren't working hard enough, or if it was because he was so long hospitalized at first and "started late" on therapy. I wondered if we "missed the window" that all those therapists mentioned. I wondered if it was just that "every stroke is different" as the doctors always say. Or if we just had bad luck, bad therapists, bad doctors...

But I wonder no longer about these things...

Recently, I had an enlightening conversation with our new attorney, who had just finished perusing 1500 pages of medical records. It seems, that two years ago, tonight, a nurse entered Bob's ICU room at about 10 p.m. and recorded, in her notes, that this patient has "right side hemiplegia".*

And each subsequent nurse, who entered his room, made the same notation on the chart.

And this went on for 11 hours.

Yet no one thought to summon a doctor.

 Until 9:00 a.m. when I arrived and said, "Something is wrong with my husband!"

And the nurse said, "Isn't he always like that?"

A statement which never made sense to me---- until now.

In fact, it all makes sense now. I mean, 11 hours? I never knew how long it had been that his brain was cut off from oxygen, but never thought, um, 11 hours. My god.

In fact, the true wonder is this: he somehow survived. My Bob is still with me. He is alive and home and I love him with all my heart.

Today I celebrate that fact.




_____
*"hemiplegia" is the medical term for paralysis on one side of the body

The Crazed Caregiver & The Collapsing Bed

So, the other night I was awakened from a deep sleep by the sound of Bob calling, "Help! Help! Help!"

I bolted straight out of bed. Flew to his bedside.

And when I get there, out-of-breath and heart pounding, I ask, "What's wrong?" Because, honestly, nothing looks wrong.

Bob says, quite calmly, "Just a minute."

Huh?

It takes me a minute to realize that he's adjusting the bed pad that's under him. And another second to realize that he wants me to boost him up in bed. This, when he hasn't even slipped down that far--maybe an inch. And a split second to look at the clock and realize it's 2 freaking a.m. and he WOKE ME UP FOR THIS?!

And though I hate to admit it, at that moment, after sizing up the situation, I snap.

I mean, I really lose my temper here. Because a long time ago, I thought I had made it clear to Bob that he is not to wake me up in the middle of the night unless it's an emergency, which means a bona fide emergency, such as the house is on fire. Or he's wet the bed.... Because, honest to God, I need my sleep. Without a decent night's sleep, I am pretty worthless.

So now, I say to Bob--well perhaps "say" is not the right word here, more like "scream" to Bob, that THIS IS NOT AN EMERGENCY!!, and I TOLD YOU NEVER NEVER EVER WAKE ME UP UNLESS IT'S AN EMERGENCY!, and WHO DO I LOOK LIKE? A FREAKING PAID NIGHT SHIFT NURSE????!!!! and so on.  I tell you, it was not a pretty sight.

And to punctuate this angry little diatribe, I grab hold of the side rail of the hospital bed and give it a good shake.

And the whole darn bed collapses!

Right to the floor.

Jeepers.

I can't believe it. I just broke the damn hospital bed. This is an expensive piece of semi-electric medical equipment. Which is a rental. And now, what am I going to do?

Well, the first thing I do is ask Bob if he's OK. He is a bit shaken, but OK. Then, I decide to leave the bed there, sort of partially collapsed on the floor, because I am exhausted and I will deal with it in the morning. I do check it to make sure it's not going move or anything, and it seems solid, so I crawl back to bed.

In the morning, I somehow manage to transfer Bob from collapsed bed into the wheelchair. No easy feat. Then, I strip the bed, haul off the extremely heavy gel mattress overlay, remove the not-so-heavy but awkward mattress and assess the damage underneath.

I can see where the right bed rail has pulled from the footboard. The good news is that I haven't really broken it, as I can see where the rail hooks to the footboard and I just have to re-attach it. To get the rail and footboard back together, I will have to lift the metal rail (which is quite heavy as it's attached to the electric motor) a good foot off the floor and, at the same time, pull the footboard toward it so I can hook the two together.

This is really a two person job. But there is only one person here who can do it: me. After a few attempts, I finally, finally manage to hoist that heavy rail, while simultaneously pulling the footboard toward it, line up the hooks, make the connection and just as it snaps into place--- I hear a clatter and find the crankshaft has fallen out.

Now the crankshaft runs from the footboard to the headboard, underneath the bed. This is the mechanism which raises the bed up and down. And it's somehow pulled loose and is lying under the bed.

After all that work, I have to take the footboard and side rail back apart, and crawl under the bed to, first, insert the crankshaft into the headboard then insert the other end into the footboard, and start all over with getting that blasted side rail attached to the footboard, all the while trying not to dislodge the crankshaft.

After two hours of screwing around, I finally manage to get the bed back together, get the mattress and overlay back on, and praise the lord! everything works....

I tell you, I learned my lesson, which is never, never shake that darn bed rail.

I think Bob learned a lesson too. I don't think he'll be waking me up, in the middle of the night, for a boost anytime soon. ha!

To end this post on a good note, this rather frazzled caregiver did have a couple of well deserved, relaxing days this past weekend when my sister came to visit and we even managed to spend some time at the beach...