All the things I wish for you….

My bed has been invaded, it’s a king, but still I find myself pushed right to the very edge to make way for my poorly boy who has snuck into my bed, literally going back to sleep the minute his sleepy little head hit the pillow. I can feel the warmth of his breath on the side my face and I can feel the rattling of his chest each time he breathes in. He’s hot and clammy, yet his little pig-sticks (the word for feet in our house) which are nestled into my side are freezing. I know he’s not well and I feel completely powerless, as I often do when CF throws us these curve balls.

Now, I don’t often allow either of my children to co-sleep, but after a night of broken sleep and with another full day of work tomorrow, I’ll honestly hold my hands up to doing whatever I need to do to get some sleep tonight.

Every time he coughs I cringe, I can’t help but picture the irreversible damage this cough is doing inside, the scarring any infection might leave behind. The invisible damage we work so hard everyday to prevent or at the very least slow down.

We have been incredibly lucky this winter, with no real cough or cold and no requirement for him to go onto his back up antibiotics, this has been (touch wood) his best winter yet! But now I find myself nervously and impatiently waiting for the results of his recent cough swab, my mind now running off to thoughts of bacteria growths and IV antibiotics. Wondering if there is something sinister down there growing, lurking……just waiting. The worry that a cough swab is negative just because it didn’t pick up the growing bacteria, is a thought always at the back of my mind.

Having made the decision to start him on a 21 day course of oral antibiotics to head off any bacterial infection, I am also drawn to thinking about antibiotic resistance, knowing Chester has already had prolonged periods of time on antibiotics it is a worry that we will start to run out of antibiotics to rid future infections.

I also find myself retracing my steps day by day over the past week, since his symptoms first started. Where has he been, what has he been doing? What and who has he had contact with, what has he touched. It’s clearly impossible to tell where the infection came from or what caused it, but it doesn’t stop me wondering if I missed something or did something wrong. Perhaps I didn’t do his physio hard enough or for long enough, perhaps I should have been more insistent that he do more.

I think about how shitty this boy has it, the things he has to go through and how I would do or give all I have to take it away. I think about all the things I want for him, the things many of us would normally take as a given and I wonder what great things he will go on to accomplish.

Having spent the day walking around like a sleep deprived zombie, I am hoping that he will settle and I will manage to get some sleep. I find myself hugging and holding him so tight, not wanting to let go, thinking of all the things I wish for him.

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