We were told during my pre-op visit with the surgeon a few days prior that the "exploratory laparoscopic pelvic surgery" would be out-patient, and I would wake up with a piece of tape over my belly button and we could go to McDonald's on the way home....Boy we were wrong.
The surgeon wanted to do the surgery to "see what was going on inside" of me, since all of the testing & scans had really not shown much, and to hopefully drain my uterus of the infected menstrual cycles that had been building up for years. He was not going to try to reconnect or "build" anything.
According to my mother, after 5 hours had passed and she did not receive a surgery update, she knew something was wrong. Eventually a nurse told her things didn't go as planned, and the surgeon would be out shortly to speak with her. When the surgeon came out she noticed he had changed scrubs from what he wearing before the surgery and these were crisp and new, but his shoes showed what she had feared. They were splattered with blood....my blood.
He explained that shortly into the exploratory surgery internal bleeding had occurred. They had to open up my abdomen from sternum to pelvic bone to find and stop the bleeding. They were able to stop the bleeding but it was touch and go for awhile. We learned later that I "Flat Lined" several times and required resuscitation and 26 units of donated blood - more than twice what the body regularly has.
I was moved to the Intensive Care Unit where I was connected to a ventilator and kept heavily sedated. Several hours later my mother noticed that my abdomen looked irregularly enlarged and very hard to the touch. The surgeon came to look and after a scan, it appeared I was still having internal bleeding. So back to surgery I went under the supervision of Chief Vascular Surgeon Dr. Richard Neville.
They reopened my abdomen, and realized I had a femoral artery aneurysm that was leaking. They had to open up my left leg from my pelvic bone down 6 inches into my inner thigh. They were able to do a gortex bypass from the abdominal aorta to my femoral artery in my thigh. I was then taken to the pediatric Intensive Care Unit. Where I was in an induced coma for 7 days. They were able to take me off of the ventilator on my 15th Birthday, although I was still heavily sedated for 2 more weeks.
I remember only a few snippets of my hospital stay. Family and friends visiting, vomiting violently anytime I tried to drink or eat. Trying to walk to the bathroom with my carotid artery central line in my neck snagging on everything along the way. I have heard several crazy stories about my time in the hospital that I do not remember personally. Going through Morphine withdrawal, and needing 4 point restraints when I tried ripping my breathing tube out. Claiming there were fish in the balloons someone had brought me. And being terrified of the "bugs" crawling on the ceiling tiles. I had over 70 staples down the middle of my stomach, and across my pelvic area and thick stitches 6 inches down my left thigh.
My loving mother stayed with me in my room on a cot every day and night, leaving only when i had someone else with me so she could go eat in the cafeteria, since any sort of smells made me sick, or to shower in the family locker room.
The nurses at Georgetown are amazing, since I was in the ICU my nurse only had one other patient. So she was quick to respond to my calls, and always appeared to silently clean up my vomit. The medical students on the other hand were a pain in my ass. No one told us we could tell them to go away, we thought that we had to allow them in since it was a "Teaching Hospital." Every morning starting at 4:00am 2 or 3 students at a time would come in, ask me basic pain scale questions and take my vitals. Every half hour or so more students would appear...just as I was falling back asleep.
Apparently I had become a celebrity of sorts, since my medical case is so complex and my age made my abnormality even more interesting. We found out later that several of the students used my situation for their case study, and the professors were discussing me in their classes.
I remember going to physical therapy a few times, they showed me how to sit up from a laying position properly without straining my abdominal muscles,and made sure I could walk with a flight up steps without too much discomfort. I remember my mom taking me to a dark, quiet and small crafts room where I played with glue and sparkles and wood tongue depressors. I remember going to a computer room and checking my empty email inbox....no facebook or anything back then. I remember getting the 70 staples or so removed, most of which I didn't even fill until they got close to my sternum and then each one felt like a knife in my chest. I remember getting my carotid artery central line removed. Slowly they pulled the 16" tube out of my neck, it felt strange, but not painful, and I had no idea it was that long until after it was out...thank God.
On July 29th I was discharged from the hospital. My mom brought a white sundress with red cherries on it for me to wear, with my black and white saddle shoes.....I was in a 50's phase. I wanted to eat "normal" food so badly that I begged her to take me to the hospital cafeteria on the way out. I could barely walk due to the healing incision on my entire torso, and had a huge gauze patch on my neck from where they removed my central line. Every person we passed stared and whispered as we walked pass. I'm sure I did not look so hot.
I was so dizzy and disoriented by the sights, sounds and smells after being in a white sterile tiny hospital room for almost a month my mind was having a hard time adjusting to the outside world. I remember saying how bad the air smelled outside, like cigarettes, stale breath and car fumes, even though my mom said it smelled fine to her. We went to the extremely large hospital eatery and I wanted Taco Bell.....looking back probably not the best idea. But I ate a few bites and was satisfied.
I honestly don't remember the days and weeks that followed. I don't remember being in pain, which was probably a good thing since I am sure that recovery was pretty bad. The one thing I do remember vividly during the month after my surgery and before school resumed was going to the beach with my best friend Joann.
I had bought a "Grandma style" bathing suit, the kind that has a skirt built in, it was the only one I could find that hid my scar almost completely. It was bright blue with Hawaiian white flowers. It was pretty cute...but definitely not for a 15 year old. My friend Joann was 2 years older than me, Puerto Rican, and had the sex appeal and attitude to match. She was curvy and proud of it. She wore a string bikini, and talked me into wearing on as well. I was extremely self conscious at first. My stomach was still swollen, my scar s still bright red, puckered oddly in sections and not at all inconspicuous. But it was liberating, and freeing and boosted my self esteem like she will never know. I have always appreciated her for that, and will never forget how she helped me recover mentally.
a few weeks before diagnoses (April 2000)
6 weeks after release from hospital in Joann's bikini. (August 2000)
Joann and I at an NJROTC event back at school after surgery (September 2000)
You've been through so much. I too have MRKH. I had the uterine remnant removed when I was 17, but luckily there were no complications. Have a happy New Year.
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