About Me

Hola, bonjour, shalom, and just hello. So lets see I was born on the 183rd day of the year there were 182 days remaining until the end of the year of 1989. I was born with a rare birth effect called “Congenital cystic adenomatoid malformation aka CCAM ”(Rarity of this condition is about 1:60,000) ah such luck eh? I was given a 1 in 100% chance of survival, they said if I could make it through the night they would then fly me to UVA, after I arrived at UVA the doctors said that they would have to wait for 3 weeks before anything could be done.

When I was 3 weeks old the surgeons said surgery was the only option and even then it would only have a 60% chance of success. So needless to say I had the surgery, and it was a success. After that surgery there have been various types of operations including chest reconstruction, Stomach reconstruction, a Nissen-fundoplication it is virtually impossible for me to throw-up(isn’t that lovely).the normal person stuff haha tonsil removal, and then I’ve had my esophagus dilated a few times but when I was 10 or so my chest cavity stopped growing, and I had to have another surgery.

I made the 15th person to ever have this surgery preformed(the surgery consists of splitting the sternum bone, and going in and making grafts from 2 ribs and literally stretching the chest cavity) it all was successful with a few minor/major complications i.e. I fell out of the bed and everything shifted (my doctor says if anything is going to go wrong it will happen to me…), so on JULY 4(do you have any idea how hard it is to get a doctor on July 4 LOL) one of the pins inside of my chest poked through the skin (ok so now I was in panic-mode-major haha), so I was back in surgery and we found out that because I had fallen, the pins shifted and one of them was dangerously close to my heart, but we had to wait before the bones took hold, afterwards, the pins were removed and all was well.

Until in 2010 we found out that as the bones and such had started growing, but it was growing to the back and my heart was exposed. There was a way to “fix” the problem that being a polytetrafluoroethylene aka “GOR-TEX”(yes the people who make rain coats and such) soft-tissue patch by placing it over my heart as a shield so now I am literally bulletproof and flame resistant! (But we’re not testing the validity of that statement). So in September it was discovered that there was a place on the side of my face that had been bothering me and growing at the same time, so it was brought to the attention of my pediatric surgeon who decided that it had to be resected so once again I went under haha but this time it was intravenous and it wasn’t that bad lol I kinda liked it better but that is aside from the story lol The subcutaneous cyst was taken off and I was granted with another scar LOL so now altogether I have had 20 operations. Until 4 weeks after when we had to go back to C’ville to see Dr. Rodgers and we discovered that I had a thyroglossal duct cyst that had to be removed so two weeks ago I had a sistrunk procedure performed to remove it, Dr. Rodgers says “he got it all” and the patho report is fine!!!!! =) They also had to remove a part of my hyoid bone so now I have a bigger dimple LOL but I’m ok with that. Well on Thursday September 6, 2010 history was made as I had my first surgery without Doctor Rodgers…it went well and thats good. I had 4 wisdom teeth extracted by Dr. Neil Hollyfield and I’ll admit it was a little scary without Dr. Rodgers but I was fine as I knew I would be.

So we learned that once again my chest cavity had stopped growing - and there just isn’t enough room for my lungs to expand.my lungs are at 60% but only expand to 34% Lol well I’ve already had it done once. But basically what they do is:The surgery involves a collaborative effort between thoracic surgery and plastic surgery. Ribs four through nine are approached. After elevating the skin, tissue, and muscles overlying the chest wall, the ribs are separated from their underlying rib beds as well as the remainder of the chest wall.The ribs are divided in a staggered fashion. The underlying chest wall is also divided in a staggered fashion in the opposite direction from the rib divisions.The long ends of the fifth and sixth ribs are then separated and put together to expand the diameter of the chest. This is also done with the seventh and eighth ribs. The divided ribs allow for expansion of the chest cavity. The two expanded rib segments are held together with titanium plates to stabilize the enlargement. The plates act as an internal cast to maintain the expansion while the ribs heal.But this time rather than using my RIBS (because they did that last time) they used a “bank” femur bone. My surgery went well but some crazy complications happened, but I’m fine and all is well now. We won’t talk about them but lets just say that I lived up to my moniker that “If anything can go wrong it will happen to me”. During the operation all was going well unto I had my blood given to me I. While it was going in I started to have a reaction my bp started dropping so it was stopped and the surgery was finished. After I arrived at the PICU they next unit was started I once again had a reaction and this time i went into anaphalaxys my bp dropped and ultimately I coded…

After 2.5 mins of compressions and paddles I was revived :) They determined that i had a reaction to something in the blood. So thry gave me washed blood I had to have some physical terapy to learn to walk again but that was in 3 days but after a week I was ready to go home!!! YAY they had said 2 weeks but once again I prove that I AM A FIGHTER!!! =]] Following this I had developed serum sickness. The blood attacked my antibodies thus inflaming my joints it was sooo painful. I had quite a few drs appts to see Dr. Kelly she’s a diagnostician just like Dr. House only the ethical version lol

So things have been going good, but we notice that these two woundson the side of my chest I have they aren’t healing. Also the upper pin is starting to protrude from the skin. So on Dec. 14 2011 I had operation #24 and it was a complete success. I was doing good until I stated to experience pain again. However, I had my #25 to remove the final pins from my chest on March 9, 2012, so that hopefully has been my final operation. So yeah, I just have a story unlike any other and to be honest:

You would never know any of this unless I was to ever lift up my shirt and show my scars on my chest turn around and show the ones on my back, turn my head and raise my chin and open my mouth LOL I’ll gladly show you LOL I am very proud of my scars as I should because without battles we can’t have scars and I’ve had my share and I’ve come out on top every time :)