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Sunday, April 24, 2011

Marking the Holidays Post-Stroke

Today is Easter and I guess, this puts me in a reflective mood thinking of all the holidays that have passed since Bob's stroke. I didn't realize when I posted last, that the day Bob started walking was the exact six month anniversary of his stroke. Strange, that.

Bob had surgery on his carotid artery on October 20 and a stroke sometime that night or early the next morning on the 21st. No one knows for sure. I had talked to him on the phone at 9:00 p.m. on the 20th and he was fine, but when I arrived at ICU at 9:00 a.m. the next morning, I found him stroked out in bed. (Yes, in ICU, and no one seemed to notice this except me. Still can't believe it.) But anyway, I was thinking about the holidays...

The first holiday after the stroke was Halloween. I know, just Halloween, but for us it had always been a favorite and magical holiday. Perhaps it's a throwback from my childhood, my birthday being the day after Halloween. But, we always decorate the house for Halloween with pumpkins and lights and candles and an illuminated ghost that Bob calls "Hughie". Then, we sit on the front porch and wait for trick-or-treaters which in our city is still held after dark. But this past Halloween, Bob was in ICU with a ventilator tube shoved down his throat and a feeding tube up his nose. He was in Critical condition and in a "semi-coma" as one doctor explained, the coma induced by sedation. Occasionally, they would try what they called a "sedation vacation", pulling back on the sedative to see if he would come to, but he wouldn't.  On Halloween I signed the consent form for a tracheostomy the next day (on my 50th birthday). I had been putting this off, but finally the doctors had convinced me that Bob would never breathe on his own and he would be more comfortable with a breathing tube surgically implanted in his neck than one shoved down his throat (unless of course, I wanted to pull the plug and take him off life support completely and I wasn't ready for that.) I was grateful, however, that my parents had arrived in town along with my aunt and uncle and that I had company. Bob's mother had been down for a few days, but had left and being alone at that time was very hard. We had already decorated the house for Halloween as we had expected Bob to be home a day or so after the surgery and now the decorations looked not so much festive but a bit ghoulish. Mom and Dad along with our neighbor, Chris, joined me on the front porch that night to greet the trick-or-treaters. I don't think I could have done it alone.

The next day was my 50th birthday, which I had been long dreading for the usual reasons, but now turning 50 seemed to pale in comparison with what was happening to Bob. When I arrived at ICU that morning, and pressed the buzzer to be buzzed in, one of the nurses came flying out to meet me. At first, I thought the worst, he had died on my birthday. But instead, she was bubbling with joy. Seems Bob had somehow "extubated" himself at about 1:00 in the morning, meaning he pulled out his own breathing tube. How he did this is beyond me, as he was restrained with cuffs to the bed, but somehow he managed it and by the time the doctor arrived to re-entubate him, he was breathing on his own. What a beautiful birthday present from my sweetheart.

The next holiday was Thanksgiving, which we spent at Kindred Hospital. I recently spoke with one of the drivers of the Wheelchair Transport who also works as a paramedic and she told me how she hates to transfer patients to Kindred as nobody gets out alive. That's not an exaggeration. Walking down the halls of Kindred and glancing into patients room, all you see is hoses like so many plastic blue octopus arms coming out of patients throats and secured to breathing machines. And the whoosh-whoosh sound of the breathing machines fills the air. Bob was there for severe pneumonia. He also had a collapsed lung and a pulmonary embolism. However, by Thanksgiving he had been coming around. Now more alert, it was apparent he was in great pain. I had spent the week before Thanksgiving hassling, begging, pleading with the doctor to give him a stronger pain medication and had hit a brick wall until I finally broke down, accused the hospital of not caring and bawled my eyes out in the case manager's office and the doctor finally relented. (If all else fails, cry.) ha ha. Thanksgiving morning was the first morning Bob received a stronger pain medication. And what a difference it made. Before, he would lay in bed for hours curled in a fetal position just whimpering in pain. On Thanksgiving morning, I walked into his room and he was sitting up in bed watching TV and that day he began talking clearly for the first time (small words but clear words)!  I feasted on rubbery turkey and thin gravy in the hospital cafeteria. Yum. But there was much to be thankful for.

Christmas was spent at the Acute Rehab Hospital. The Pink House was uncommonly dark. We usually decorate our house with pink lights for the holidays complete with a pink tree on the front porch. But not last year. On Christmas Eve, I woke up distraught. I remember lying in bed that morning, praying, please let me take Bob home, please let him start moving his leg. That week I was still fighting with the doctor and case manager: they wanted to discharge Bob to a nursing home. I wanted him to come home. But it seemed they were winning this fight. I had visions of having to steal him, smuggle him out that hospital somehow. At this time, Bob was still completely paralyzed on the right side. At home, I have a antique book on the shelf in our bedroom called The Secret Science Behind Miracles which was published in the 1930's and I happened to notice it that Christmas Eve morning and picked it up. The book is about the kahunas in Hawaii and how they perform "miracles" in healing, etc. I opened the book and read immediately a section about "lomi-lomi", in which the kahunas would invoke the subconscious mind of the patient to heal themselves. So I went to the hospital that day, thinking about lomi-lomi, and when I arrived Bob was still asleep, so I thought, what the heck, I'd give this lomi-lomi a try. So I sat by his bedside and tried to invoke his subconscious, saying pretty much anything that came to my mind as I massaged his right leg. Then the nurse came in and I stopped, feeling quite stupid and embarrassed. But later that day, I found Bob staring intently at his right leg. Then, he suddenly lifted his leg in the air. I cried out, I was so shocked. The nurse came in and saw him move that leg, and she ran out of the room and rounded up all the therapists to come and have a look. Of course, they took credit for this Christmas Eve miracle.

On Christmas Day, I had another holiday feast in a hospital cafeteria of rubbery turkey and dry ham.  Bob and I spent the day looking through some photo albums I brought to the hospital. Bob learned to say "Merry Christmas and Happy New Year" that day, and kept saying it to everyone he met straight through the end of February.  Later that week, the case manager (who was thankfully a bit daft) was processing the insurance still intent to send him to a nursing home, when she came up with a $3,000/copay that she thought was due up front. I know that Medicaid would have paid that, if I had wanted, but I played dumb instead and told her I didn't have that kind of money. So it was settled, Bob had to come home with me.

New Years Eve day, he came home. New Years Day, my dryer broke. aaaah. And I began to question my decision--maybe he should have went into a nursing home. Enough about that.

Now, it is Easter and he woke me up at 5:00 a.m. having once again wet the bed......... yes, we are still dealing with that. The urologist thinks he might have a "neurogenic bladder," they will be running tests the first week of May.

But, it is good to have him home. Even if it is a lot of work. At least, I don't have to spend another holiday at a hospital cafeteria. It's frozen pizza for me (and the dog) and Jevity 1.5 in the can through the feeding tube for Bob. Maybe some tuna treats for the cats. But what the heck. It's still a celebration.

So, Easter Greetings to everyone. Please hold close those you love today and everyday. Life is precious because you never know what will happen.

And thanks so much everyone for the comments! Some days, the only thing that gets me through is seeing those comments and knowing someone out there is reading this and cares.


Nikki said...

Ohh, that was such a sweet entry! Here's hoping you have a good day today, even if it isn't a conventional Easter.

Jenn said...

Damnit! I'm crying, again. I love you guys! Thank you for bearing your heart....... Happy Easter (a day later)

Sally said...

I am glad you keep us all informed as to the progress that Bob is doing and also you. My prayers are with you. You know I love you both.