It’s interesting when what is supposed to be simple, becomes difficult and challenging. The procedure Izzie had recently was described to us as a simple catheterization, where they would close the hole and maybe coil a few collaterals if need be. It was an overnight stay with discharge in the AM. We packed light. We encouraged her that she could do this, that soon everything would be over and she would feel better. Problem is, four year olds do not care if they feel better, they only care about getting poked by needles and how much that is going to hurt.
I knew it was going to be harder than we initially thought during the Pre-op Scavenger Hunt. We call it a scavenger hunt since we have to go to various places within the hospital before we can sit down and discuss the procedure. Labs were first and to make Izzie a little more comfortable, numbing cream was placed on both arms. The mere act of placing cream onto her skin terrorized her. She shrieked and tried to squirm her way out of our laps. Eventually we were successful, but only because she saw a little boy having the same cream put on his arms and he seemed to be fine with it. Whew! Thank goodness for peer pressure.
The moment of relief quickly dissipated when her dad and I realized that if she was that upset about cream going onto her skin, what would she be like when we would have to hold her down so that her veins could be accessed? My heart began to beat faster and I breathed in deep breaths to calm this growing anxiety that threatened to remove my sanity. I looked at the white board that had our Scavenger hunt written out. Oh my God. Not only did we have to have labs, but an echo? Chest X ray? And and EKG? Holy crap.
I looked at Izzie sitting on her father’s lap with tears still on her face from the cream application. This was going to be a long day. I sighed and sat down next to Chris, both of us sitting in dread. We went down to the outpatient blood lab. We watched the Teletubbies as we waited for our turn in the torture chamber. At a conference about Congenital Heart Disease that we went to I received a coloring book on catheterizations to help explain the process to a child. Unfortunately, there was nothing in it on how to deal with the fears and trauma that a child has from a lifetime of procedures. The book had a page about blood drawing, but I can guarantee you our experience looked nothing like what was in the coloring book.
We had to hold her arms down as the technicians searched for a vein. She screamed and looked at us through tears and disheveled bangs. “Make them STOP! MOMMY, DADDY! MAKE THEM STOP!” As soon as they got what they needed, I picked her up and began soothing her. I rubbed her back and she melted into my shoulder, her little hand looking for my ear to play with. We held her for a bit while we headed back to the Pre Op Home Base. The EKG wasn’t much better. Neither was the echo. Telling her that you are just putting stickers onto her doesn’t make the fear go away. She doesn’t want the stickers. She wants you to take those stickers and shove them up your ass.
Our last stop was a room in cardiology. We had seen Izzie’s cardiologist after the echo and were confident that we were ready for the next steps. We knew that she was going to have a cath, but we weren’t sure what the closure entailed. The attending drew a diagram that Einstein would have struggled with deciphering and then explained how they were going to close the hole. He was trying to engage Izzie but she wasn’t having it. She wanted to go home. She was done.
We signed the papers, shook hands and said ‘See you tomorrow morning!”
This was all stuff for Pre-Op. This wasn’t the real deal yet, and already I was having palpitations thinking about how scared she was going to be the next day. Nothing I said or did comforted her and I think that was what was scaring me the most. The fact that I wouldn’t be able to pull her out of it. I had to be there and allow her to feel what she was feeling, no matter how much it hurt us to.
I will be writing about the procedure in a different post because this entire experience was so overwhelming for us I don’t want to do the same to my readers. Today she is enjoying watching her iPad, having tea parties and having Cinnamon Toast Crunch. We are hanging in there and she looks amazing. Her numbers have stayed in the high 90’s and we feel so blessed.