Gab is having her dental surgery tomorrow which is just surgery one out of two this week. Thursday she is being put under full sedation for Botox injections in her leg and thumb. Although she has had surgery to help with her Cerebral Palsy on both her ankle/leg and her arm/hand it just wasn’t enough. It has been 2.5 years since her leg surgery but for the past several months she has been having pains in both of her legs. The stiffness has reoccurred and they believe if they do Botox injections in the muscle it will help. Her arm/hand surgery went very well over the summer and she has excelled in therapy over the past few months, however they believe she has reached a point if they don’t have some more relaxation of her thumb they won’t be able to help her progress any further. So we are hoping the Botox injections in her thumb will help this, especially teamed up with extensive therapy afterward.
After a week of doctor appointments over her tooth and being on several antibiotics to help fight the infection, we are trying to get ready for the surgery tomorrow. Fighting exhaustion this week and spending all weekend at the house cleaning and organizing, trying to play catch up from house neglect for over a week, we are now heading to bed. Preparing for surgery or a procedure is a process that Gab and I have become accustomed to. Having all her medical treatment over the years at the same hospital makes it much easier. Everything is very familiar there and it makes the routine seem more natural. Friday she had pre-op at the hospital and the same questions were asked, the same forms had to be filled out and the same routine procedures were followed. My brain has just programed everything in place it seems. I could probably quote the words on those forms without seeing them, tell you exactly what questions would be asked in what order and pretty much tell you step by step what happens. Even though the steps come natural doesn’t mean they are easy.
Gab has a major fear of the oxygen mask. At Cook Children’s Hospital they like to put the mask on children to slightly sedate them so they don’t remember the IV. Usually they start the IV once they are sedated and take it out before they wake up or shortly after. This is their way to make sure the children do not feel pain. When Gab had brain surgery it was a very rough four months. She was sedated for all of her procedures and brain surgery wasn’t something simple to explain. So to Gab the oxygen mask is a reminder that once she puts it on she never knows how she will wake up, in pain or not. She also knows that after she falls asleep with it that the doctors are going to do something to her. That is very scary to her I’m sure. For months after brain surgery she played with a therapist using spare oxygen masks and placing stickers on them, playing with dolls and trying to get her comfortable around the mask. Showing her the mask is not the enemy and is not what hurts her.
Friday during pre-op when they asked what scent she would like to smell in the oxygen mask she was not having it. She actually refused to pick a scent, which isn’t the first time. The doctor tried to explain to her if she wouldn’t allow them to use the mask then they would have to start an IV. Sad yet funny, Gab actually told the doctor she would rather have an IV than wear the mask. She said there was no way they were using it and although she understood they were putting her to sleep she would rather pick out a place for them to stick her. The doctor looked at me like Gab was crazy and like he expected me to say something. He was just so confused as why a child would pick pain over a nice fruity scent. I just looked at him and shrugged and said ‘she wants what she wants and after all she has been through, I think she knows best to decide’. And that’s just it… at seven years old I’m not preparing my daughter for surgery as much as she’s preparing all of us. In many ways Gab inspires me and leads me each day. Her mood swings during this is like being on a rollercoaster and I think I speak for both of us when I say, I can’t wait for surgeries to pass again and life to go back to normal. Whatever normal is… If you have a child with ADHD and/or Mood Disorder then you know routines and schedules are very important, get thrown off path and things become chaotic in your home. That’s where we are at today.