Welcome back! I tried so darn hard to get some photo gems for this post. But during a time of Myspace and Photobucket, it was a huge struggle! Oh well! And after lots of medical talk, it’s time to do some housekeeping on what was happening in my home and social life the next couple of years.
My family moved from an apartment into a new house the summer after my seventh grade year. A few months after the move, my parents split up and so did my family. I went to live with my mom about 40 miles away from McKinney in the Denton area at my aunt’s house and my little brother stayed in McKinney with my dad.
While this was very unfortunate and stressful, the change in schools in the middle of my eighth grade year helped me find some really great new friends. I absolutely loved going to school in Lake Dallas. I was only there for a semester, but while I was there I met one of my lifelong friends, Jordan.
We spent nearly all of our free time together and I wouldn’t have had it any other way! We even survived a weekend together while Jordan had to take care of one of those fake babies for school – one of those that cries constantly and you can’t get away from because you have the bracelet that is the only thing that makes it happy. We also spent a ton of time working on our Myspace profiles, which is absolutely ridiculous in hindsight. In addition to that, we took tons of photos that were solely for Myspace as well. Oh, and we picked the perfect songs for our Myspace. You know all the important things!
Living in Denton was temporary though. Once again, my mom and I moved across DFW to another town called Murphy near Plano. This move was so tough on me. I loved my new school in Lake Dallas and then moved to a brand new school at the beginning of my freshman year. While I did make some friends and have fond memories of this time, it was really a very sad time for me.
I distinctly remember being in the hospital for a week during my time at this high school. This is mostly because a mean kid in my math class yelled, “Hey! I heard your stomach exploded and that’s why you’ve been gone!” across the classroom. Talk about embarrassing. But hey, what can you expect from a kid who harassed girls by throwing paper wads down their shirts during class?
All of this to say, while my health had improved a bit using TPN, my social life and home life fluctuated a lot, which caused me a lot of stress. I tried to make the new school in Murphy work but ended up making my way back to home base in McKinney after one semester. I felt that getting back to a place I knew with existing friends would be helpful. In the long run, I believe I made the right choice. I made a full circle through four schools in a year and ended up back where I would have been had I never left.
In May of my freshman year at McKinney Boyd High School (if you’re keeping tabs, this is 2008), I found myself in the hospital twice within a couple of weeks with severe symptoms. The first time, I needed an NG tube to decompress my belly. After a few days, I told my doctor I was feeling better and was given the thumbs-up to go home.
I could tell a doctor I felt better while sitting in a hospital bed for four days even if I still felt terrible. Being in the hospital was just the worst (except when you’re allowed to eat anything you wanted off of their awesome menu!) But in this case, it was my dedication to being a good student. I missed a TON of school throughout my school years, but I always maintained at least a low A in each of my classes. Funny thing, the one class I got a B in was online Physical Education. Yeah, what kind of sick joke is that! Anyway, this time, I wanted to get out of the hospital so I could get back to school to complete the standardized tests for the end of the year, the TAKS test.
That wasn’t all. I wanted to attend my choir banquet. It was the end of the school year, when all of the fun programs and events happened and I did not want to miss out. Plus, I’d never been to a banquet before! So how much fun is that, right!? I remember going to the banquet and being absolutely one-hundred percent miserable. My dress felt like it was about to rip because my stomach was so distended and pain was shooting through to my back like nobody’s business. But I stuck with it and stayed for the whole gosh darn ceremony. I even ate the pasta, which is a food that everyone loves that has always caused me a lot of pain.
That weekend, I stayed with my momma and was sick for the entire time. Finally, I agreed to go to the hospital. It was a good thing I decided this was a good plan because I had a terrible infection brewing in my gall bladder. The doctors decided my gall bladder needed to be removed because it had become an issue due to persistent dehydration and the use of TPN.
For some reason, it was July before the surgery was performed. I believe it had to do with running a course of antibiotics to allow it to chill the heck out before they went in there to take it out. I remember the surgeon coming in to the examination room before the surgery expecting to find a little patient with a distended belly and finding someone with a flat belly. She was so excited!
July kept up its fun and I ended up having my first port replacement surgery too. Sometimes ports develop what is called a ‘fibrin sheath.’ Essentially, it is a little cluster of cells that form and hang out on the end of the catheter. Sometimes, they block things from being able to get in or out of the catheter and this happened in my case. So I was unable to infuse my TPN for a couple of days as a result.
Three days later, after becoming severely dehydrated waiting for the surgery to install new port; I landed in the emergency room once again with a kidney stone. The good news is, it passed fairly quickly and things went back to normal. But good grief, what a month!
The rest of the summer of 2008, I had a pretty good run basically eating soups and very little solid food. I had so much fun that summer! By this point, I was doing well enough that my doctors would cut down a day of TPN every few months. The ultimate goal was to get off of it all together! I was down to four days per week. For the other three days of the week, I was port free and able to do whatever I pleased!
I was doing pretty dang well. At least my weight was stable at a little over 100 pounds. I constantly lived with an uncomfortable distended belly, nausea and vomiting, significantly less energy than most kids my age and I missed a lot more school than normal kids. But I was still able to have fun and live my life, and that’s what mattered.
I had a great group of friends, loved school and singing in choir, going to concerts and dying my hair pink. I also became active on the Patient Advisory Committee at Children’s Medical Center in Dallas. This group of adolescent patients worked together to come up with ideas on how we wanted to be treated. With pediatric patients, doctors usually deal more directly with the parents of patients rather than the child who is the patient. The purpose of this committee was to discuss ideas on how we wanted to be included in our own care.
By February of 2009, I had been reduced to three days of TPN per week. I was so close to my goal! How cool is that! An appointment at Children’s Medical Center with my doctor and dietician always led us to Red Lobster for crab legs on the way home.
It was really cool to feel like I was making progress in the right direction. The right direction was being off of TPN and thriving by eating foods by mouth. At this point, I was so hopeful for this to become reality and I was getting so close! Stay tuned to see what happened next!