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Thursday, November 29, 2012

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
1/4 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.

Sunday, November 25, 2012

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.

Wednesday, November 21, 2012

"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.

Sunday, November 18, 2012

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.

Thursday, November 15, 2012

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.

Sunday, November 11, 2012

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.

Thursday, November 1, 2012

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!"