Thursday, June 9, 2016

What If It Were You?

What if it were you scouring the Internet?
A search for the mystery inside your broken body
An answer to the aches and pain
A type of pain that Band-Aids and kisses couldn’t fix

What if it were you who knew something was wrong
But not even the doctors were sure
If they didn’t have an answer who would?
Did they even believe this pain was true?

What if it was you fighting for your most basic right?
The right to life
Is that even fair?
Truth is nothing ever is

What if it were you enduring the unimaginable?
Endless pain, Numberless needle pokes
Helpless doctors, Countless procedures
All while being defenseless against your own body

What if it were you crying,
Trying to remain above water.

Could you do it?
Just for a moment,
Try to picture it being you.

Try to picture being me.

Monday, June 6, 2016

Prom, Hospitals & High School Graduation

Almost a week and a half ago (May 26th) I was able to walk across the stage an receive my diploma! This was a huge accomplishment no one was sure I would be able to make happen but it did and I am so happy for that!
The story is fairly long and complicated but it goes like this...
My Hickman line broke on April 18th. We weren't entirely surprised this happened because I had that current line placed for more than a year and a half! We knew it would break eventually we just didn't expect it to be then. We called the surgery team who asked we go down to the ER to be evaluated. They told us my line could be fixed but we knew with the type of line I had it was not repairable. That's the bad thing about having a Power Hickman line. In the ER we dealt with a resident who wasn't the brightest man in the world. He said well it's broken but it's not THAT bad... He said I wouldn't need surgery and as long as I used alcohol wipes it wouldn't be an infection risk. To which I freaked out and asked for my surgeon to come down. Finally my surgeon got there and said I did need surgery to get it replaced. However, they couldn't get surgery scheduled until a week later! One side of my line worked to run TPN but the other was broken and couldn't be used. So we had to make do until then. The night of surgery I spiked a very high fever. However, upon arriving for surgery I didn't have a fever so they continued with the surgery as planned. I had a double port placed and went home immediately.
I was able to attend my Senior Prom which was only a few days after surgery. Although my chest was bruised and I didn't feel the greatest I was able to enjoy and awesome night with friends!
 Michaela (me), Amy (mom), Kiley (sister)
Kiley, Carson, Michaela (me), Emiley

Just a few days later the surgery team called and said the Hickman line that was removed had grown gram negative bacteria. I was placed on oral antibiotics and that was supposed to be the end of that. However, as I began to finish antibiotics I started developing low grade fevers and began to feel unwell again.

I woke up around three am on Sunday, May 22nd and I wasn't feeling quite right. Worse than I had been feeling all along. I had a horrible migraine and my body ached all over. That feeling is typical for only being a few days post- IVIG treatment.I already had all the meds I could get so I tried to get back to sleep but it just wasn't happening. I got up out of bed and decided to take my temperature just to see if there was something going on even though I didn't feel like I had a fever. Well sure enough I had a fever of 101.2 which meant I needed to get to the hospital. We finally got there around six in the morning. Cultures and other blood work was drawn so we were going to wait and see what came back. Most of my blood work looked okay. However, I was not doing well. My blood pressure kept dropping more and more each time they took it until it got down to 89/33. That's when they became very concerned. I got extra IV fluids and was admitted to the hospital.

Although my blood work looked okay I continued to fall into the path of very low blood pressures, exhaustion, and pain as we waited for cultures to come back. Surely enough at the 48 hour mark my blood cultures had grown gram positive rods which meant I had an infection in my port. This time it was an entirely different infection than what I had before! I was upset and angry but we continued to push on hoping I would be out of the hospital by graduation. I was feeling a little bit better but there was still so many issues with my blood pressure that no one could figure out. It was starting to come up a little bit but it still wasn't great.

My hospital is unable to give a day pass to allow the patient to leave the hospital for a few hours so if I was going to graduation I had to be discharged completely. The night before graduation no one was sure I would be able to make it but I reluctantly asked to leave the hospital so I could go walk across that stage just like all of my friends.
Child Life had a nice surprise for me when I left.
Although I felt horrible I was let go on IV antibiotics and some extra medication to help me get along. We ran out of the hospital real quick as I was only discharged a little less than four hours prior to the time I needed to be at graduation. However, we made it and I was so excited! After everything I have been through I was able to walk across that stage and close all of the struggles and heartbreak I have been through over the last four years. I worked extremely hard trying to complete make up work, coming in before school and staying late to receive extra help from teachers for my missed work, the extra hours spent with my homebound teachers, and just trying to make it out of bed to school in the morning even when I felt way too sick.

I did it!! I will be off to Converse College in the fall of 2016.