When i was a baby i was always in and out of the hospital with surgeries or just because i was sick. Growing up my parents tried to have me lead as 'normal' a childhood as possible. Although, i do know that 'normal' is a relative word, because what may be 'normal' to one may be 'abnormal' to another. I played sports, was in music, went to public school and had friends. But during all of this there were random stints of time where i wouldn't be able to show up to school; anywhere from a week, to several months. In 2nd grade i missed the whole month of February because i caught Triple Pneumonia. Yes. Triple. That was no fun at all, but i did learn that the PICU has a really great Play room for Patients.Growing up a lot of my friends didn't really know why i would randomly miss school. That was until i got to Junior High and P.E. became an everyday thing....
a photo of a heart during open heart surgery.
When in 7th grade i had to start 'actively' partaking in P.E. I was given a really good teacher that knew i could only do what my body would allow, so if i didn't run the mile; i didn't run the stupid mile. In August of 1998, right before i started 8th grade; i became severely ill. My folks didn't really know what was wrong with me, after a day or two of crazy fever and everything they took me into the docs for an appointment. I remember this day vividly. We went into the doctors office, i was fairly lethargic....i looked pale....and just really felt like shit. The doctor weighed me and i clocked in at about 80 lbs....that's right, 80 lbs at 13. I was previously about 100. This was just the general clinic so they didn't have an Echocardiogram Machine or anything. But they did have an EKG, he took my EKG and did a few more exams on me. When he completed he looked up at us while grabbing for his phone and told my mom to take me to the ER and that he was calling a head to let them know.....
We got to the hospital and a billion other tests were performed on me. A CT. MRI. MRA. Echo. EKG. STATS. Everything. I was hospitalized for 2 weeks. In the end they diagnosed me with Endocarditis. Inflammation of the Muscle lining on the Heart. And what do i owe the great pleasure of this diagnosis? None other than the Dentist. Yep. That's right. The Dentist. I was already Petrified of this Jackass; but now i have even more reason to run and hide from any mention of the 'D-Word'.....
2 weeks after i was initially admitted to the hospital i was discharged to go home. But it was not that simple. I was going to be on an out patient care program. They sent me home with a Home IV....usually they try to do a home IV the same as an IV at a hospital, through the forearm. This is when we first realized i might have a neurological problem, called Neuraliga; as well. ( Yay me right?) Because when they placed the pick-line in my forearm my whole nervous system went psychotic and basically spit the IV line out of my arm, onto the floor. So in the end i had to go under and have an IV surgically placed into my heart.
It was kind of like a port. I had to wear a fanny pack type contraption to hold the IV medication bags, which was Amoxicillin and Potassium; otherwise known as Banana Bags. On top of the IV medication bags that i had to carry around with me, i also had these medicine balls that i had to hook up to my IV port a couple of times a day with Gentamiacin. Let me tell you; that has to be the worst medication i have ever received. Both Intravenously and Intramuscularly. This medicine had to be kept in the freezer to preserve the antibiotics and protiens. And it BURNS like all HELL when administered. A nurse came to my home a couple of times a week to check on me and help change the dressings on my IV port site. A teacher from my school also came a couple of times a week to teach me my lessons as well as give/ collect homework. It had to be the most boring couple of months in my life. On top of having that IV bag and Fridge and Freezer full of medications i had to carry around needleless syringes pre-stocked with Saline to flush the IV as need in case of back flow.
Yes, back flow. Because if i got to active blood with shoot out of my heart muscle and fill up my IV line. Let me tell you, the first time i had to flush my line i was petrified. My hands were shaking so much that to this day i don't even know how i was able to fit it into the IV port to clear the line. To this day ANY type of syringe makes me cringe. Just hearing the medication Gentamiacin being said makes my spine tingle....it is that bad. I was so sheltered and lonely during this time. I had family of course, but not many friends.
This my mom saw, so 2 months after my diagnosis was my birthday and my mom thought it'd be god for me to throw a surprise birthday party. I was very shocked when i came home from spending the day with my dad to see all of my friends at the house to party. My mom even let the party last hours longer that she usually would have. But part of me was un easy about it. I wasn't sure what to do during the party, for fear of the IV....to be honest at the time it kind of sucked. But i know why she did it.....she wanted to see me happy again.
A week or so after the party i was able to go back into the hospital to have the IV port surgically removed. Which left me with 3 circular scars on the right side of my chest....weird; i know! I was able to go back to school once Halloween passed....little did we know that would be the last of our cardiac issues.......
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