It’s been quite a while since the discussion of Chester having a port was first raised and this week we had our first appointment with the surgeon who will be fitting his port.
Sat in the hospital waiting room we were scanning the room like meerkats who are on the lookout for enemy in their territory for any likely CF patients, we even went so far as to ask the nurse on the nurses station if there were any known CF patients there, which of course she said she didn’t know.
The unease of not knowing if there was anyone with CF and knowing that the surgeon we were due to see fits the majority of ports including those for CF patients in this area resulted in us asking an array of parents if they had CF children with them. Luckily all answered no so we were left with that warm fuzzy feeling that Chester and others were safe.
We were called through to see the consultant and almost as soon as we walked into the room the flick was switched and both kids turned from little angels to…..well, I don’t think it would be appropriate to use the word I actually want to use but let’s just say they weren’t on their best behaviour.
Chester immediately climbed up onto the consultants looking like butter wouldn’t melt, but those looks didn’t fool me and I knew straight away that he was just trying to get closer to the keyboard and phone as he does in CF clinic.
The surgeon showed us the port and explained in detail how the surgery would work and how it would be fitted. We knew he would be having a bronchoscopy as well so he explained this would happen first, then the port fitting. It has also been decided that he would remain admitted for two weeks of IVs which I won’t lie I am dreading, but they will move him from the hospital back to our local one once he’s good to travel.
The port looked significantly smaller than one I had already been shown and I was a little happier that despite him having a slight upper body it wouldn’t protrude as much as I first thought.
After running through an extensive list of potential complications, approximately 35, I was finally asked firstly if we still wanted him to have the surgery and secondly how did I feel about it myself.
I won’t lie, it’s taken time for me to come round to the idea of Chester having this port, and my reasons for not wanting it are purely selfish. I have also thought long and hard about how I have to be so careful about the way I cope and deal with these things, my two boys are always watching me and I need to show them both that it’s no big deal, that it may be different but it’s superhero different and that he should not be ashamed or embarrassed about it.
But it’s now booked, next month he will be having his port and he will have another scar to his already growing collection. In all honesty he already has so many scars, what’s one more? I have often seen people staring at him when I take him swimming, and I have learned not to care and I learned to look at it that those scars are marks of huge hurdles he has overcome and they are something I am proud of him for and one day I hope he will be proud of them too. Until then he is one step closer to being ironman and that makes him even more of a superhero in my eyes.