Wednesday, July 4, 2007

The End of the Beginning

I'm back! Ready to hear the end of my story of medical basketcase-ness and on to the good, funny stuff? Well, I've gotta finish this one first. Here it goes.

After staying in West Boca Medical Center for so long that I'd made friends with the nurses and they were showing me their vacation pictures (no, I really do mean that, I seemed to be doing better so they let me out after a week and a half. I had missed the Safety Patrol trip that my school took, so all my friends were coming to my house and giving me stuffed animals that said 'Washington, D.C.' and 'The White House', and liscense plates for bikes that said 'Casey Visited the Capitol' even though I didn't. I heard stories and recieved emails that made me laugh and feel bad that I missed the trip. I felt so good that everyone was still here for me, even with a face and body full of Prednisone side effects. (learn about them here):

So after a day or two of feeling great, I started feeling a sharp, intense pain in my side. My best friend, Haley, and her mom Diane, were both over, and I kept telling my mom to put her hand in a specific place. My mom called the doctor and it was into the ER we went. I had a kidney stone. Well, I had 2 kidney stones. Big ones. I'm not gonna get in to all the details of that, but it was another 3+ weeks stay at WBMC. I got a lithotripsy, which is basically where they put you under anesthesia, blast your kidney stones with sonic power or something, and you wake up with a bruise on your side. It was painless, and since I was thin it barely left a bruise. After the lithotripsy bruise healed, I still wasn't getting much better, so Dr. H decided I should take this medicine by IV called Remicade. He said it was slightly experimental, and not many people took it. It was only for extreme measures. It was the last thing we could do before surgery, so we agreed to try it.

That night I was taken into the PICU (for those of you without an advanced medical degree, that's Pediatric Intensive Care Unit) because I would need to be closely monitored to make sure my blood pressure didn't go up, my heart rate didn't quicken, and my breath didn't get shallow. After 8 hours in the PICU with the Remicade going into my viens, I was free to go back to the Peds floor. I fell asleep, and the next morning I felt better than I had in years. I was up and walking again, laughing again, being myself again, and I was ready to go home. The Remicade was given to me in 2-week intervals. It was given 2 weeks later, then 4, then 6, and it was going to be 8, but I couldn't go further than 6 without having a flare, so we kept it at 4. We couldn't do this forever, my doctor said, because my body would grow immune to it over time.

After a couple months of feeling amazing off the Remicade, Dr. H ordered another colonoscopy to see how far we'd gotten. I thought I'd be in and out, no problem. I fell asleep from the anesthesia without any worries, and woke up to see my mom talking to Dr. H, a worried look on her face. I began to cry, as I always do on anesthesia, and after I was done kicking and screaming my mom walked over. "Ok..." She started. "Not what I expected. He said you don't look so good, and you're gonna need surgery."


So here I am now, with my ostomy bag and all, an ostomate, as we like to call them. I won't have to live with this forever, just for the next 7 weeks. Follow me as I tell you what it's like to have to crap in a bag, wear maxi pads that feel like penises, and walk like the Hunchback of Notre Dame.

I am... and proud to be... an ostomate.

I'll just keep telling myself that and maybe someday I'll believe it.

Till next time,

1 comment:

Di said...

Nana Judy should DEFINITELY not read this one...since she would certainly think of the same question I did only with much more anxiety!!! How do you know the maxi pads feel like penises???????