The Neck Brace Fiassco

On Thursday, we went back to the brace place as Bob's new "Headmaster" neck brace was in. When they tried the new brace on Bob's neck, he immediately began to cry. When the sales rep asked what was wrong with it, Bob said, "hurts".

This time, I brought Bob's old neck brace with me and I showed that to the sales rep to see if it could be adjusted at all. He adjusted it and put that on Bob's neck, but still, Bob just sat there and cried.

I asked Bob which would he prefer: the new brace or old? But he kept crying and mumbling "no no no" over and over.

I didn't know to what to do. I hate making decisions like this. Ultimately, I decided to buy the new brace because it looks more comfortable and is more adjustable than his old "Aspen" collar. My thought was that after a few more weeks of neck exercises, the brace may be more comfortable and I'd wait before making him wear it. But when I took the new brace up to the counter to pay for it, Bob completely flipped out.

He started screaming: "No! No! No!!!" at the top of his lungs.

It was one of those times when you just wish the floor would open up and swallow you whole.

I felt like a witch buying a torture device.

Neck Stretch and Spine Alignment

I tell you, by the time we got home, it was me who was in tears.

Yesterday, the OT came back for a visit and asked to see the new neck brace. When I took it out of the bag, Bob jabbed an angry finger at me and growled, "You!" And he kept it up, over and over that angry finger jab and  "You!"

On a better note, the OT managed to get Bob into this neck stretching position which also helps align his spine.

She did this by boosting him up in bed so that his shoulders were at the top edge of the bed and then sort of bolstering him around with pillows.

He was so comfortable, he fell asleep. I'm trying to figure out if there is a way I could do this at night and still keep the head elevated enough for the feeding tube pump.

I tell you, even though he can be a complete shithead sometimes, he's still one handsome dude.

And I do love him.

A Better Way to Wash Hair in a Wheelchair

OK, I admit it: I'm a genius! Remember this rather precarious position the OT had tipped Bob's wheelchair in before she began his neck stretching exercises?

Well, I was thinking about that and then I wondered: could I do this at the kitchen sink when I wash Bob's hair??? hmmm...

For over the past year, I have been washing Bob's long hair by backing his wheelchair up to the kitchen sink and placing one of those U-shaped basins around his neck. I have a rubber shower hose connected to the sink faucet. This method usually leads to more water on the floor, and on Bob and on me than in his hair.... Always a frustrating chore.

Especially now with his head drop problem, hair washing had turned into a nightmare....

So the other day, I tried tipping his wheelchair at the sink. And do you know what? It worked!! ha ha!

I can't believe no one told me this trick before.

If you are thinking about trying this, here's step-by-step directions:

1. Disengage the anti-tip wheels (if you have them) either my flipping them up or removing them.

2. Back up the wheelchair in front of the sink. Judge the distance. You want the top of the back of the headrest/backrest firmly on the sink edge.

3. LOCK THE WHEELCHAIR BRAKES BEFORE YOU TIP THE CHAIR!!! This is important, or the wheelchair will slide out.

4. Once you've locked the brakes, standing at the side, with two hands, one on each of the handles, slowly pull the wheelchair backward toward the sink until it rests on the edge.

NOTE: You cannot do this with an unoccupied wheelchair. It's the weight of the person that keeps the wheelchair in place.

And there you have it. A much easier way to wash hair at the sink in a wheelchair. We've done this twice now and the last time, Bob stayed completely dry (except, of course, for his hair!). And, an extra added bonus, I can do his neck stretches while washing his hair. And here I was worried about finding the time for them.

OK, I'm feeling mighty proud of myself for figuring this one out.

How To Elevate the Head of the Bed for the (G-Tube) Feeding Tube.... or Not.

Right now, I am feeling a bit:

a) pissed

b) guilty as all get-out

When Bob was discharged from the hospital, I was trained by the nurses in Acute Rehab on how to feed Bob through his G-tube. At that time, the nurses told me to always "keep the head his bed at a 45 degree angle" or else he would "aspirate and possibly die".

Right before we left the hospital, a nutritionist was sent up to Bob's room with the prescription for Bob's Jevity (the nutritional liquid food) and again, I was warned, to "never, ever lower the head of his bed less than a 45 degree angle."

When Bob arrived home, the home care agency sent a nurse set up the feeding pump and show me how to use it. Again, I was told "never let him lie flat, always keep the head of the bed at a 45 degree angle" or else "the feeding tube will back up and fill his lungs with fluid and he could drown."

I remember asking someone if that was just when he was feeding or all the time. And was told to never let him lie flat, ever, because the tube could cause fluid in his stomach to backflow up his throat.

Back then, the only thing I knew about feeding tubes was that Terri Schiavo had one and they turned it off and killed her. That was the extent of my feeding tube knowledge.

I did not see the procedure when they inserted Bob's peg tube, only knew what I saw from the outside--that long, thin rubber tube disappearing into a hole in his belly. I imagined that behind that hole, Bob's feeding tube was some sort of coiled contraption inside his stomach, sort of a fragile snake, that was going to pop or explode if I wasn't careful and all his stomach contents would shoot right out of his mouth and he would die on the spot.

So, like a good, careful wife, I followed the directions to the T.

I remember at Outpatient Rehab, when the therapist wanted Bob to lie flat on an exercise mat and I freaked out, telling him that "Bob could never lay flat, because he has a feeding tube!" And therapist apologized and told me that he had "forgotten about that" and went and got some pillows to elevate Bob's head.

I also remember the very first at-home PT, who gave me a sheet of exercises but told me that Bob must not do any exercises on the list that involved twisting or bending his stomach because that would damage his feeding tube.

I must admit, I was terrified of that feeding tube, terrified that I would do something wrong...

Back in January when Bob had his tube replaced and I watched that doctor take his old tube out, I was quite astonished to see that inside his stomach was only about an inch of rubber tube and a small rubber balloon shaped like a sea urchin about the size of a half-dollar which kept it from pulling out his stomach. That's all it is. And I started thinking, well, why the hell can he never lie down flat? Why would stomach contents backflow if that's all there is to that tube? I mean, when I lie down at night, my dinner doesn't shoot out of my mouth.

So I broke a few of those rules and let Bob lie flat while we did exercises. And I started having Bob do those trunk bends and twists and man, poor Bob's stomach muscles are so weak from long-time neglect....

But I kept that head of the bed elevated at a 45 degree angle when giving meds, daytime feedings and when the feeding pump was turned on at night. Because, you know, I didn't want to drown him.

And now he has all these neck problems from being kept in that 45 degree position. And the OT tells me that we need to let him sleep flat--but you know, I can't let him drown. So I get a bright idea, which was to start his pump earlier, at a faster flow rate, while we watch our nightly movie and then disconnect it at night so he could lie flat. I told the therapist my idea and she said that I'd better check with a doctor before I did that because I could possibly damage his stomach....

So I called a nurse I know and asked her and she devised a plan where I would do half of his dose in the evening and the rest in the morning, but I would then have to flush the pump with water so I could reuse the feed bag and I needed to keep Bob upright "at least two hours after feeding" before putting him down flat. All of this sounded like a big pain in the ass. Then she said, "you know, you can lower the head of the bed to about a 33 degree angle and still be safe."

I tried that 33 degree angle, but I wasn't sure exactly where that 33 degree angle was---and I was terrified if I put Bob at, say, 32 degrees I might kill him, accidently--of course.

The other day we were at Bob's primary care doctor's office because that doctor cancelled the antibiotic order because he wanted to "see Bob" first. The doctor comes in and tells me that the reason he wanted to "see Bob" was because he decided not to order an antibiotic after all, but he would order one if Bob started coughing up "green stuff" but he wasn't worried about the brown stuff. He said, he wanted us to come to the office because it was easier to tell me this in person than trying to explain this to me on the phone.

GAA!

I tell you, after 45 minutes waiting for the wheelchair transport to take us to the doctor's office, and another 30 minutes or so spent in a terribly cramped men's room with Bob trying to pee, I just about flipped.

But since we were there, I told him all about Bob's neck problem, what the OT said and asked him about the 45 degree angle vs. a 33 degree angle on the head of the bed while the pump is running at night. And do you know what he said?

"Well, Diane, you know you don't have to keep the bed raised that high."

and

 "All you have to worry about is that Bob's head is elevated higher than his chest. 

So don't let him lie completely flat. 

Just have the head of the bed tilted a bit and his head propped up on a pillow."

And I said, "Why the hell did all those people tell me it had to be at a 45 degree angle?!!!"

And he said, "They always say that. Because that's what they do in the hospitals and a 45 degree angle is a 100% safe angle. But it's not really necessary."

But the problem is, when I do lower the bed, Bob's neck is now so twisted and the muscles so tight that it is stuck in the forward left leaning position and his head will not tilt backward at all....

Like I said, I am feeling a bit:

a) pissed

b) guilty as all get-out

and add to that

c) like a complete idiot

Bob Stretches His Neck

Funny thing is that the neurologist said there was absolutely nothing that could be done for Bob's Head Drop Syndrome or "Cervical Dystonia" as he called it but lo and behold, count him as another doctor who doesn't know everything...

The OT came for a visit early this morning and the first thing she did was put Bob in this rather scary looking position. Which pretty much freaked me out.

She said that tipping the wheelchair like this would take pressure off his back and spine.

Then she began a series of gentle head tilting and neck stretching exercises.

 Some of which did not look too comfortable.... Poor guy....

But he took it well, without a single complaint.

She wants me to start doing these exercises with him daily.

So now I have a new duty to add to my ever-expanding list of duties. 

Can someone tell me where to find an extra hour every day?

Another Diagnosis & A Lot of Stress

Yesterday, a rather serious, bespectacled OT showed up to take a look at Bob's shoulder and neck problems.  Her conclusion is that Bob has a nerve impingement in his shoulder caused by either a "brachial plexus injury or thoracic outlet syndrome" which is "possibly caused by a kyphosis deformity (in process) due to repetitve positioning concerns." Those are her words.

And don't ask me what the heck all that means! Though the one thing I do know is the "repetitive positioning concern" is that Bob must sleep with the head of his bed elevated due to the all night feeding pump. And he's been sleeping in that position for over a year.... And when he sleeps, his head leans to the left and his chin rests on his chest and this is exactly the position his head is now "stuck" in....

So it does make sense. More sense than the gloom-and-doom neuro doc's diagnosis of CIDP.

The OT is coming back tomorrow to begin stretching/strengthening exercises with Bob's neck and shoulder. Which sounds terribly painful, if you ask me. But fingers crossed and I do hope this will help him.

And now I have to figure out a way to run that feeding pump earlier in the evening and once again early in the morning so that Bob can have some "down time" lying flat at night... I just consulted with an infusion nurse about flow rates on that pump and cutting his dosage in half to split it up and I have a plan to try tonight---which is going to be rather a pain in the butt, as I will have to flush out the bag to be able to reuse it, but what else can I do?

Meanwhile, it's been a stressful couple of weeks here at The Pink House. Bob has had a runny nose for about two months now and I've already consulted two different doctors about it, the first one told me it was allergies and the second (just three weeks ago) told me not to worry unless the mucous/phlegm turns colors and if that happened he'd order an antibiotic, and just this weekend Bob coughed up gobs of brown stuff so on Monday I called the doctor's office and told them the situation and asked if the doc could order an antibiotic, and a while later the nurse calls and tells me an order for an antibiotic has been sent to the pharmacy. Later on, I call the pharmacy and the automated message tells me we have one prescription ready to be picked up, so I dash over there to get it, only to find that the pharmacist has put a hold on it because there is an interaction between that drug and Bob's warfarin and they are waiting for the doctor to call in a different kind of antibiotic. So I go back home and the nurse calls and tells me that now the doctor wants to see Bob back in office! Of course, I argue but noooo, we have to go back even though he was just there three weeks ago and just had a chest x-ray which was clear, we have to go back so the doctor can see Bob---so we go tomorrow. I tell you, these people do not understand how difficult it is to travel with a severely disabled person in a wheelchair...

On top of that, this same doctor's office totally screwed up Bob's home draw. "Home draw" is the term used for when a lab technician comes to your house to draw your blood. Bob has to have monthly blood tests for his blood thickness and having a home draw is a incredible blessing. Before anyone told me about home draws, I was pushing Bob in his wheelchair six blocks to the nearest lab in 90 degree heat and one day, one of the technicians at the lab (seeing me all sweaty!) asked why the doctor hadn't ordered a home draw. And that's when I found out there was such a thing. Well, since then, we have had the luxury of a technician coming to the house when just this month, no technician showed up, so I called the lab and asked what happened only to be told the doctor's office CANCELLED IT. So I call the doctor's office up and they tell me that someone named Angela (who I have never met) cancelled it because "Robert should come in to the office for his monthly blood test". GAAAA! So after a few more phone calls, and a lot of arguing with various people, I got them to set up another home draw, but they changed companies on me, which meant I couldn't use the second lab slip (from a different doctor) and had to push Bob six blocks to the lab for that doctor's test and then when the technician from the new company finally arrived, I find out some idiot at the doctor's office ordered the blood test WEEKLY instead of monthly which was another big mess to fix.

Meanwhile, I called around and found a place that carried the "Headmaster" neck brace that Bob's neuro doc ordered. At least, they told me they had it in stock when I called. So I get Bob all already, dressed and shaved and hair washed (and that's another fiasco, imagine trying to wash his hair with his head in this position) and we take the wheelchair transport to this place and when we get there the sales guy tells me he has never heard of a Headmaster neck brace. So, since we are there, I ask him what do they have in stock and he brings out several neck braces, all in pieces and sealed up in plastic bags. So I ask if we can actually see one of these, you know, put to together and if Bob could try it on, but he tells me that HE CANNOT OPEN THE BAG UNLESS WE BUY IT. What is with that? So that was a big wasted trip. He's going to order the Headmaster and call me when it comes in. (I wonder if we'll be able to try it on before buying it....)

And we're still waiting on the botox injection insurance approval which is taking forever. And Bob's arm is still giving him a lot of pain.

So if I sound completely stressed out, it's because lately, there are days I just do not even want to get out of bed.... And I ask you, is it just me? or are people purposely trying to make my life harder?

Is it Really CIDP or... Is it Something Else?

I've been doing a lot of thinking since that fateful neuro doctor's appt. And I'm really beginning to wonder if that doctor is right.

Now maybe I'm just in denial, you know, that first stage of the grieving process? Or maybe not. But here's what's on my mind:

When Bob had full-blown CIDP, he had muscle weakness in his legs, tingling and burning in his feet and hands. His hands would tremble and he had a difficult time holding a pen or pencil without shaking. His feet and legs would swell up. He complained constantly of pain in his legs. He had difficulty sleeping at night. And he couldn't hold up his head.

Now Bob doesn't have any of the above symptoms except the inability to hold up his head, but now his head is tilted to the left (unaffected) side instead of straight down as it was with the CIDP. So it's a more like "cervical dystonia" than a basic "head drop".

OK, I did ask the neurologist about this, told him that Bob had no other symptoms besides the head drop and the head drop was different. The neuro doc said it didn't matter, that he was positive it was CIDP and sometimes CIDP just "attacks one specific area of the body."  (Mind you, he didn't run any new tests.)

I asked him why would the CIDP return and act differently this time. He gave me an odd look then told me that the CIDP was never gone, it's always been active and it's just getting worse.

Now wait a minute, I'm thinking, because this is the doctor who told me the CIDP was gone after Bob's stroke. (Look in my "popular posts" and you'll see that post there, back in 2011, and believe me, I did not make that up.)

Since that appointment, we had a PT evaluation from the home care agency. This is the same physical therapist who worked with Bob a couple of months ago. The neuro doc had ordered PT for Bob's shoulder impingement. Anyway, I like this therapist and do trust her judgement. This is what she thinks:

She said the reason Bob is leaning to the left is most likely because of the shoulder impingement, he's basically leaning away from the painful/frozen shoulder. She's not sure if it's an impingement or "frozen shoulder" or subluxation, and really, she said, the doctor should have ordered OT not PT for this problem. She asked if the doctor ordered x-rays and I told her that he did not. She asked a lot of questions including what position did Bob sleep in at night. I told her that because the head of his bed has to be elevated because of the all-night feeding tube pump, he always ends up sleeping in a reclining position with his head down, chin resting on his chest, leaning toward the left. Ah ha! she said, if one sleeps in a position like that for a long time, it certainly is going to stiffen your muscles and mess up your posture....

Hmmm.

Then this morning I received an e-mail from a friend of mine in Minnesota who is also caring for her husband who is a stroke survivor. She told me she had read my blog post and, most interestingly, she knows a woman who is caring for her brother who also suffered a very massive left hemisphere stroke about the same time Bob did. And just recently, her friend's brother has also started "slump over" with his neck leaning to the left side....very much like Bob is doing.

Hmmm. Again...

So now I wonder is it CIDP? a posture problem? or something stroke related? And how do I figure this out? The last time we had to go for a second opinion from a neurologist, we had to travel some 200 miles all the way to Gainesville to a speciality neuro hospital---which would be an awful ordeal in the wheelchair transport (not to mention, bloody expensive).

Right now, the PT is putting in an order for OT to come out and evaluate the shoulder problem. She's also requesting a different PT to come out and assess the situation and see if that PT has any new/different ideas....

And me, I am just sort of confused. I certainly wish I could ask Bob his opinion, if he thought it felt like CIDP but when I do, I get different answers, including both "yes" and "no" and then just many complaints about his neck hurting.

And I think that's the worst thing about aphasia, that Bob can't tell me what's going on, he can't explain how he feels and so, I am just always guessing...

A Turn for the Worse

On Friday, Bob and I went back to see the neurologist. I have been quite worried about him as he seems to have lost ability to hold his head up and, not only that, his head tips to the left side (his unaffected side). More and more, it often seems his whole body is leaning to his left. It's very weird and more than a bit unsettling, to say the least.

Bob playing Scrabble.
Notice how his head is dropped down and leaning left and his left shoulder is lower than the right
He seems to be "stuck" in this position....

The neuro doc confirmed my worst fear: he said that the CIDP has returned. Actually, what he said was he thinks it's the CIDP. He did not do any tests on Bob except for tapping him with one of those little reflex hammers and asking Bob to try to hold his head up as much as he could and looking into Bob's eyes with a light... 

I asked him what we could do, if Bob could start the CIDP treatment, but the neuro doctor said that IV-IG (the standard for CIDP treatment) was too risky for Bob--it could cause another stroke. That basically any treatment for this problem would be too risky, so unfortunately there is nothing we can do... though he did give me a prescription for a neck brace.

Bob sitting at the edge of the bed....
He cannot straighten up from this position.

We talked then about Bob's neck pain and the neuro doc confirmed what I had told the pain management doctor which is DO NOT take Bob off the Warfarin, EVER. As that would be a HUGE stroke risk for him with his blood problems. Good thing I didn't listen to the pain doctor. The neuro doc told me that he thought doing the facet treatment while on Warfarin could be too risky. It could cause spinal bleeding and that could be fatal.

So, I guess there's really nothing we can do about Bob's neck pain, either... except beg the pain mgt. doctor for more oral medications--which I am rather doubtful he will do, but I will try at our next appointment.

Next, the neurologist checked out Bob's right arm which has grown very painful. He diagnosed a "shoulder impingement" and is going to order more PT just for that problem.

And he is going to order Botox for Bob's arm pain. We are waiting now for the insurance approval on that procedure.

One of the biggest problems all this is currently causing is that it is making it very difficult for Bob to practice walking at the rail. Now, instead of just leaning on the railing with his hand/arm, Bob's head and shoulder are actually brushing against the wall, while his whole body is sort of twisted inward, toward the wall.

The other day, I found a floor length mirror in the alley and took it home and put it in the hallway, thinking that it would be helpful if Bob could see his posture while walking and maybe he could be able to self-correct it.

Unfortunately, he cannot look up to look into the mirror. I, however, had a good view of what he looked like from the front and he looked so darn pathetic that I couldn't help but to begin to cry.

And Bob heard me and asked, "You sad?"

And I told him I was worried he would never be able to walk again....

And he said, "I strong!"

He raised his left arm and made a fist with his hand and said, again, with conviction, "I strong!"

"I know you're strong."

He wheeled his wheelchair back to the beginning of the rail, to start another practice walk. And while he wheeled backward, he said, "I walk! I walk! You see."

I guess, I have to have some faith in him. And we have to keep trying.

But I tell you, right now, I am heartbroken...

Voodoo

Here's Bob's latest masterpiece! He calls this one "Voodoo" and I guess that's self-explanatory.
He spent a lot of time on this one, about 2-3 months. And yes, this is drawn with his left (non-dominant) hand....

Voodoo
by Bob

On The Road Again

Home Again!

Finally, The Green Machine is home! And what a beautiful sight to see her parked in the driveway where she belongs!

Bubba dropped her off last night. He told me if he had charged his regular rates, the labor alone would been over $1000.00.  God love him, he's not charging me for labor at all. He said he wanted to do something for Bob and me. He and Bob have been friends for nearly 15 years.

Bubba told me he feels it's so unfair. He said, "You see all these jerks out there, being complete assholes, and they have all the luck, all the money and are healthy as horses. Then you see Bob, one of the nicest guys I've ever known, and this happens to him. It's just not fair." He says it makes him wonder if there is a God.

I told him, regardless, he's certainly an angel.

So I am back on the road!  Whoo hoo!! It's been a darn long four weeks without wheels. So if you see me and The Green Machine on the road, give a wave! (I'd honk, but the horn don't work!) You'll know it's me because there are not many green 1973 Dart Swingers out there, especially one with this vintage bumper sticker: