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Sunday, February 27, 2011

On The Road With Bob

A couple of people have asked me, just this week, how on earth do I get Bob around? After all, he is 6'3", partially paralyzed, and I'm 5'4". So, I thought I'd detail what it takes to move him in this post. Before I do, please don't feel sorry for us. I knew what I was getting into when I took him home (against the doctors' advice) instead of sending him to a nursing home.

At the hospital, they used to move Bob using a machine called a Hoyer Lift. This device has a hydraulic arm that picks the patient up out of bed with a large sling, swings him around through the air and then deposits him in a chair. They wanted me to rent a Hoyer Lift for our home, but I nixed the idea for two reasons. Good grief, who has room for this huge contraption (it would take up most of the living room!) and second, I am a strong proponent of "tough love" and I figured that Bob needed to get moving on his own, and what better motivation than just to make him work for it and not have the convenience of a machine to do the work for him.

Our Ramp
I spent a lot of that last week at the hospital arguing against the Hoyer Lift. The therapists told me it would take three people to physically transfer Bob from bed to wheelchair, but I remained stubborn and asked to be shown how to use a slide board (also called a "transfer board"). Finally, they gave in and brought out a slide board and showed me how to use it. Bob and I tried it out, and I thought we did pretty well and I thought that was the end of the Hoyer Lift debate, however, the day before he was discharged, I got a call from a medical supply company telling me that they had an order from the hospital for a Hoyer Lift and when can they deliver it? (GAAA! I cancelled the order.)

Here's how we do it:  First, I roll the wheelchair next to the bed and park it at an angle. One wheelchair arm must be taken off, as well as the footrests. Then, Bob must pull himself forward to a sitting position and swing both legs over the side of the bed. He sometimes has difficulty swinging his legs, so I help him, but I let him get as far as he can on his own. Once up, he must scoot to the edge of the bed and get his feet firmly on the floor. Then, I position the slide board. The board is just that, a long board with tapered ends, slickly polished with varnish. One end of the board rests on the wheelchair seat and the other end is positioned under Bob's left thigh. The board then makes a little bridge between the bed and the wheelchair and Bob scoots along this bridge on his rear end and ultimately slides onto the wheelchair seat. He's got the scooting part down pat, almost goes too fast (freaks out the therapists) but he basically can do this part on his own and I'm only there to make sure he doesn't take a tumble. Once in the chair, the arm goes back on as well as the footrests and we are ready to roll! Out the back door and down our ramp, which is a bit of a carnival ride with all the twists and turns. Bob helps by grabbing onto the ramp rails as we go down.

Friday, February 25, 2011

Amazon Breakthrough Novel Award

The good news here is that my novel (Little Flowers) made it to the "second round" of the Amazon Breakthrough Novel Award contest. You might be wondering: what the heck is she talking about? I thought this blog was about Bob and his stroke... Well, excuse me while I digress for a minute...

Shortly after Bob came home from the hospital, I found out that the Amazon contest was open for entries again. This is a contest held every year by Amazon.com. So, I quickly (and I mean quickly) uploaded a manuscript, hashed together a "pitch", etc. and entered one of my novels. Most of you know that I have two books published (one nonfiction, the other a collection of short stories) but have been trying for years to publish a novel to no avail. (I've written eleven novels, no less.) Last year, I secured a wonderful agent, Melissa Sarver at The Elizabeth Kaplan Agency in New York. Melissa fell in love with Little Flowers and helped me edit it, then pitched it to about 30 publishers, all of whom nixed it--usually because the novel did not fall into a concrete "category" and editors thought it would be difficult to market. I found out that Melissa "gave up" on it shortly before Bob's stroke and since his stroke, I've really done zilch about my writing. I mean, I've got my hands full here.

Wednesday, February 23, 2011

CIDP Could it be--- Gone?

Bob and I went to see his Neurologist yesterday. This is the same neurologist he has been seeing for four years for his CIDP. CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy (yeah, I had never heard of it before, either, it's pretty rare).

Bob was diagnosed with CIDP in 2007. His first symptom was a sort of crick in his neck that would not go away. After months and months of various doctors, x-rays and MRI's, and misdiagnoses (one of which was torticollis, which he got treatments for, to no avail) and a trip to Gainesville to see a specialist, he was finally properly diagnosed. CIDP is an autoimmune disease. Basically, what happens is that one's own immune systems goes wacky (that's a technical term, ha) and begins to attack healthy cells. In the case of CIDP, the immune system attacks healthy nerves, literally stripping off the myelin outer sheath of the nerve (hence the term "demyelinating"), causing extreme pain and muscle weakness. Bob's CIDP started in his neck and progressed to his legs and ultimately began attacking his arms. It had gotten so bad that Bob could no longer work and, in 2008, he applied for and was granted Social Security Disability. CIDP can happen to anyone. It happens when the immune system becomes overwrought from fighting something (i.e. a prolonged illness or, in Bob's case, an allergy.) The culprit, in Bob's case, was a drug called Vytorin (a statin drug) prescribed for high cholesterol. Turned out, he was highly allergic to this drug. There is no cure for CIDP, however, there is treatment. One of which is IV-IG, in which healthy blood plasma from donors is transfused into his blood in order to boost his immune system. The other is a drug called Cell Cept, which is usually given to organ transplant patients, and calms the immune system down. Bob was on both of these before his surgery and subsequent stroke in October.

Sunday, February 20, 2011

The Dreaded "Plateau"

Bob's Occupational Therapist has told us that he has "plateaued" and she will not see him anymore. I have been warned about this word, this "plateau", that we might hear it again and again. It means he has gone as far as he can, that he is no longer progressing, that he is---what? Toast? Lord, I hate this word, "plateau". It feels like giving up and I refuse to give up. The OT had been working on his right arm, which is still a dead thing, but....

To give up? So soon?

It seems there is a magic ruler out there. That if a stroke survivor doesn't reach Point A by X time, forget it. I really don't understand.... After all, I remember, in the hospital, when I asked the doctors what to expect, I was always told that "every stroke is different" and "every patient responds differently" but now, because Bob hasn't hit the "magic mark", let's just give up.

I am frustrated. Worn out and worried. This coming week, Bob's certification period is up for Home Health Care. I have no clue what to expect.

In the meantime, I will paste the electrodes on his right arm and run the TENS unit. I will massage his right arm with oil and do the exercises. And I will not give up. Plateau--be damned.

Saturday, February 19, 2011

Spring Has Sprung

Well, it looks like spring is here. This week the weather has been perfect. Highs in the upper 70's and lows in the 60's. And our tabebuia tree is blooming.
I grew this baby from a pilfered seed pod a few years ago. It's now about 6 feet high!

Thursday, February 17, 2011

3 Doctors = 3 Different Diagnoses

Since December, Bob has been complaining about mouth pain. He began complaining at the Acute Rehab Hospital and I asked for a doctor to look at his mouth. Nothing happened there. So, when he came home I asked the home care nurses to take a look. No one could see anything wrong with his mouth. I took him to his primary care doctor, who ordered x-rays and looked in his mouth and could see nothing wrong, so suspected it was "nerve damage" from the stroke. He prescribed Lidocaine ointment. Which didn't work. I took him to the Pain Management doctor, who looked in his mouth, and thought it might be an infection of some sort. He prescribed nerve block injections (which didn't work) and also to smear his gums with yogurt... This week, I took him to the Endocrinologist, who looked in his mouth and said it looked like Bob had Scurvy! (Ahoy, mate! Who'd of thought?) That doctor asked what type of feed is used in Bob's feeding tube, and then told me that these solutions are not all that great for nutrition. He believes that Bob has been suffering from a vitamin deficiency, and sent me to the pharmacy for multi-vitamins plus extra C and 1000 mg of Vitamin D. He also said I should shoot Orange Juice into Bob's feeding tube. This doctor was also appalled that the Rehab doctor had doubled Bob's steroids, saying to me "What is he trying to do? Kill him? He can get Cushing's Disease from this, and look at him, he doesn't look well." Boy, did I feel terrible. I mean, I've been giving him the prescribed dose and didn't even know it was dangerous.... Who can you believe? Or trust?

This week, Occupational Therapy dropped off the map, followed by Physical Therapy. (They are waiting for "approval" to continue from the insurance.) This caught me off guard, because I was told everything would continue until the 28th.  I did talk to that Social Worker, who is going to see if she can straighten things out and get Home Health Care approved for another 60 days. I pray she does. Meanwhile, I have become both the Occupational and Physical Therapist. No wonder I'm exhausted.....

On a good note, Bob has been able to bend his right knee a little more this week!