I had such a lump in my throat while sitting at the hospital, although I was very scared for my friends son, I couldn't help but being flooded with memories of the times that Dave and I spent sitting in a hospital waiting room hoping our baby girl Erin would be OK. Surgery was such a big part of our life from 1993 through 1997 it became our new "normal." I have tried to forget..... but it's part of our past and has formed us into the family that we are whether we like it or not.
When we (ok it was really just me) decided to go ahead and fix Erin's scalp we thought it would be a one time thing. Dave just went along with what I said. He had "Yes Dear" down by the time princess Erin came along. The original surgery was a scalp reduction, the surgeon was unable to remove all the defect and suggested we wait 6 weeks and try tissue expansion to make new scalp to correct the area that was missing hair. This is the point where I wish I had my time machine to go back and decide that enough is enough and we would not be having more surgery. 2 surgeries became 4 then 6 became 9 and here we are at 12!
I have decided not to beat myself up over the decisions that I made...ok verbally I have stated I will no longer beat myself up....in reality, my heart still aches for my choices and I wish I had a do over.
Childrens hospital in St. Louis is an amazing place, Dave and I spent hours and hours pacing their hallways. They used to have this big waiting room with hard plastic chairs all around the perimeter of the room. To the left of the door was a countertop with coffee and a phone, a beige push button phone that rang all day. On the other end of the phone was always a nurse from the OR telling which family to come down to the double doors that lead to the operating room to meet with the surgeon.
I never thought about it until yesterday while waiting with my friends but Dave and I always sat as far away from the phone as possible. As much as we wanted to hear that all was good and she was finished....we were scared out of our ever living minds. I hated that phone and everything that went on on the other side of the double doors!!!
On one particular surgery, things went way longer than expected. Dave and I sat and watched family after family, answer that stupid phone. We kept waiting for someone to say, "Murphy." We were always one of the first ones there and the last to leave. This particular surgery I remember as if it was yesterday. She was scheduled for 3 hours and we were creeping up on hour six. Dave and I were so young, not even 25 years old, we were too young and naive to demand better communication. I do not fault the hospital, they were concentrating on Erin. Dave finally went and asked someone to check and one of the nurses came out to explain that they had some complications and it shouldn't be much longer.
When I finally got to see her, she was all bandaged up as usual with a big turbin of white, partially blood soaked gauze and tape. This time she had an IV on each hand and one on each foot. It was so sad...they needed one for fluids, one for medicine, one for blood draws and one for blood transfusions. Each of her precious little hands and feet had a little square board under her IV's to keep them from bending. My heart hurts each time I think about it, she was only 3 years old.
I could go on and on about each of her 12 surgeries and list all of her complications. (trust me, we had many) What compelled me to write about this today is to remember how I felt...... not so much what happened.
Sitting with my friends yesterday....I felt it again. I felt it for them and selfishly I felt it for me. It is a feeling I don't ever want to experience again. It is sheer panic, the best way for me to describe it is if someone jumps out from behind a corner and scares you!! You are panicked for a second and your heartbeat returns to normal. When your child is undergoing long tedius surgeries it is as if your heart is being held hostage in a state of panic for hours and hours. The word nervous is just not an appropriate enough word. It is sheer terror. Each spouse tries to stay strong for the other but in reality you would prefer to jump off a building to stop feeling so scared.
It is what it is and it has molded us to be the family that we are today. It will always be a dark spot in our past. It has also helped Dave and I to learn to not sweat the small stuff. We have always been blessed to have kept things in perspective. Even though what we have experienced with Erin was difficult, we also met many families who have dealt with much worse. Erin was the type of kid who made it easy, she never complained. She is beautiful inside and out.
This has helped mold my beatufil Erin to make the decision to become a nurse. Erin is almost 21 and she only has a year and a half left of school until she becomes an RN. There is not a doubt in my mind that she won't be the most loving compassionate pediactric nurse St Louis Childrens Hospital has ever seen.
Unfortunately Erin's health issues are ongoing and we can't predict whether or not she will need more surgery. She did have a 12 year break from the time she was 5 until 17 without complications. Her last procedure was in May of this year and I would love to say it gets easier but it doesn't.
