Wednesday, December 9, 2009

Continuing my story

Continuing on in the story of my accident...I was still in the ICU at Barnes Jewish Hospital and I was slowly and steadily getting stronger. One exception was that I started having problems with my heart. My heart rate would slow way down, and as a result of the injury to my spinal cord, my nervous system couldn't tell my brain to make my heart speed up again. I would pass out as a result of not getting enough blood to my brain, which was very frightening, because although I could feel myself starting to black out, there wasn't anything I could do to prevent it. Long story short, my doctors thought the best solution would be to put a pacemaker in my chest to regulate my heart rate.

My pacemaker surgery was scheduled for December 15, nearly one month after my accident. I still was wearing the halo vest, which had been put on three weeks previously when I had my neck stabilization surgery. I'm not sure why, but I couldn't go into surgery to get the pacemaker with the halo on, so it had to come off early, even though I was supposed to wear it for three more weeks.

On the morning of my surgery a doctor and a nurse who I'd never met came into my room at 5:30 in the morning and began to dismantle the halo. I thought the halo would be taken off in surgery after I'd already been put to sleep, but this wasn't the case. The doctor had a wrench and he just went to work without even acknowledging me, even though I was obviously awake. Since the halo was attached to my skull with four long screws, it was excruciating to have the doctor jerking my head back and forth as he took the halo apart. When the halo was finally off, the doctor and nurse dumped all of the pieces for the halo onto the floor in the back of my room, and then they left without even putting my head on a pillow. I was stunned at what had just happened, and I remember feeling very vulnerable since my weak neck was left unsupported. I was insulted at not even being acknowledged, and the doctor/nurse's total lack of bedside manner and courtesy.

My pacemaker surgery went well and it solved the problem of me passing out because the pacemaker would take over and make my heart beat faster if my heart rate dropped below 60 beats per minute. I was so relieved to have the halo off since it had been so big and bulky. It also made it very difficult for the nurses to wash my hair, so when I got back from surgery it was finally time for a decent hair wash! It had been about three weeks since my accident, and my hair hadn't been washed the entire time. It felt good to have it thoroughly washed. After my shampoo the nurses would French-braid my hair in pigtails to keep it contained and as neat as possible. I'd never liked myself in braids, but I didn't care, so long as my hair was relatively clean and out of the way.

My neck was still very weak, so I wore a hard cervical collar after my surgery. I liked wearing the collar because it supported my neck really well and made me feel more secure. Sometimes I would get uncomfortable and I would ask my family or friends to readjust the position of my head. I think it made everyone understandably nervous to move my furniture neck, but they would do their best to try and help me be more comfortable.

It was mid-December by this time, so that meant the Christmas season was in full swing. A couple of my friends from the movie theater collected money from the different employees so they could bring me a few Christmas goodies. They bought me a little fiber optic Christmas tree and some little Christmas ornaments to decorate the tree. I loved that little Christmas tree so much and I never turned it off. It cheered me and helped to remind me that it was Christmas, even though I was stuck in the hospital.

Now that my health was relatively stable I knew that the next step would be going to rehab, but setting this up was easier said than done because my mom's insurance did not want to pay to send me to the kind of facility where I could get the level of care I needed. There were two model spinal cord injury rehab hospitals: Craig Hospital in Denver, Colorado, and Shepherd Center in Atlanta, Georgia. It was imperative that I go to either of these hospitals, but my insurance wanted to send me to a cheaper facility which was basically a nursing home. The doctors at this facility didn't specialize in spinal cord injuries and the facility really wasn't designed for people with the complex type of injury I had. They sent a representative to talk to my mom, and she told my mom, "I hear you'll be sending your daughter to our hospital." It was clear to my mom that this nursing home-type facility wouldn't be a good fit for me. After the meeting my mom emphatically told the woman, "I will not be sending my daughter to your facility."

To make a long story short, my mom switched health insurances to Blue Cross Blue Shield. This proved to be an inspired decision, because they would pay for me to go to a specialized rehab facility. My mom called Shepherd Center on Christmas Eve and started talking to some of the people there. It sounded like a great rehab hospital, so we started the ball rolling so that I could go to rehab as soon as possible. Mom and I definitely weren't looking forward to leaving town, but we knew that this was a necessary step to take in our new life, and it also meant that we would be one step closer to our ultimate goal, which was going home.

That's all I have time to write about today, but I'll write more soon!


Kathe said...

You are just awesome!!..what an interesting journey!

Kristin said...

Wow - you are obviously a very strong young woman. Keep up the writing!

Lorraine said...

Thank you for sharing all this, Heather. Your story is riveting. Blessings.

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