Today was day one of fourteen of our latest two week admission for IV antibiotics to treat Chester’s Pseudomonas. It always sucks, it reminds me of how crap Cystic Fibrosis can be. I am always full of mixed emotions, knowing it is for the right reasons that he gets rid of the bugs but also hard knowing what he has to go through and what I am expected to put him through for that end result.
With a theatre slot booked at 1400hrs this meant getting Chester up early and stuffing him with a huge breakfast before the 0700hrs nil by mouth cut off point.
We arrived at the hospital looking like we are moving in with our own bedding and umpteen bags, Chester isn’t one for travelling light. It can never be a good thing when you’re walking to your room and all the staff are saying hello to Chester and commenting on how much he’s grown since his last admission (only 5 months ago).
We patiently waited for the usual admission routine, weigh in, height, medication list, gown issue and then a visit from our Consultant.
Like the last admission the plan was for Chester to have a long line put in to save cannula changes which is the kinder option. For those unfamiliar with a long line it is a fine plastic tube about 10-15cm long that is threaded into one of the smaller veins, usually in his arm until it reaches a point where the veins are much larger, usually just outside the heart. They don’t always last the full 14 days but last time it did so fingers crossed we have the same luck this time.
When the time to take him up to theatre came, he was rolling around in his cot like a little drunk after being given something to chill him out, despite that he still managed a smile and sat there like Lord muck as he was pushed through the hospital corridors.
Once in theatre it hits you, even though it’s a fairly minor and basic procedure it doesn’t make it any easier handing him over unconscious to a complete stranger. Watching him go under never gets any easier.
Then there’s the silent walk back to his room, seeing the big empty space where his cot should be. The clock watching starts, minutes seem to go backwards and the hour and a bit we waited for that call to say he’s out drags like a seals arse.
But finally we got that call. I literally speed walked to recovery to see my baby snoring in his cot, his chest slightly rattling and arm bandaged heavily to stop him getting to the line. When I see him laid there like that, I have that awful feeling of guilt, I hate that I’ve had to put him through this again.
Safely back in his room I sit next to his cot and watch him sleeping, I could watch him for hours, he looks so peaceful and so well. To look at him you wouldn’t think he was any different to any other toddler.
I start to get angry thinking about CF and what it’s doing to him, my only solace is that I know how incredibly brave and strong Chester is. He is truly remarkable smiling through it all, no matter what comes his way, he keeps me where I need to be, reminding me that no matter what CF throws at him he’s more than capable of dealing with it.