The waiting is the hardest.

Usually I would be jumping at the chance to sit and have a child free coffee, to be able to drink it while it’s warm without one of my children kicking off because they’ve had to sit still for longer than five minutes or knocking my drink over whilst playing with their toy cars and trains. I often long to be able to just sit and enjoy the peace and quiet whilst taking in the local scenery, or what most would call people watching. 

But yesterday as I sat in the coffee shop next to an empty high chair staring at my cappuccino, I have never wanted my boys to be with me so much. Feeling a little lost that there were no sticky hands or faces to wipe and feeling a little guilty that I wish so often I could have just 5 minutes to myself to enjoy my coffee. 

Today was the sixth time we’ve handed Chester over in an anaesthetic room to a bunch of complete strangers who we find ourselves trusting with one of our very most treasured possessions. It really doesn’t get any easier, the only thing that made yesterday slightly less traumatic for me was the fact Chester was already out cold from his pre- Med so there was no physical fight to get him to sleep. As far as Chester is concerned he fell asleep in one place and woke up in another. 

Knowing both the procedures would take some time, we made the decision to wait a couple of hours in the cafe, I find waiting in an empty room with a space where Chester and his bed should be too upsetting so we choose to spend our time waiting in the cafe or the parents room or walking the corridors, anything to avoid waiting in his room. 

It is only a few hours of waiting but it’s agony, I cannot imagine what it must be like for parents waiting for children who are having timely procedures. For Chester both procedures are fairly straightforward but when the Surgeon starts to mention collapsed lungs, chest drains and perforated lungs just before the surgery whilst asking for consent, the hours of waiting feel like a lifetime and all those dreaded “what ifs” start to float round my head.

We have always been allowed to go to recovery to see Chester and yesterday was no different, it’s always a worry as we never know how the anaesthetic will have affected him. As we walked towards the cubicles I could hear his breathing straight away, and I was instantly relieved that I could hear him, his breathing was rattling and noisy but I didn’t care, he was still here and still fighting, that’s all that mattered to me.

Chester being the head strong stubborn little chap he is, was trying his hardest to sit up, despite being drowsy still and when he heard us he tried so hard to get to us, that the Doctor told me to get in the bed with him to keep him calm. There I am fully clothed in bed being pushed down the hospital corridors, snuggling with my baby and it was the best feeling in the world and right then nothing else mattered. I could smell the anaesthetic on him and I could see that he had a dressing on his left shoulder, I just wasn’t brave enough to look any closer at that time.

Back in his room we tried physio to release what we could from his lungs, the bronchoscopy had kicked up the mucus in his lungs and his cough was resembling a 90 year old, 50 a day smoker. He managed to cough up a lot and clear his lungs and airways a little which made him more comfortable. Then the regular poking and prodding, Oxygen levels, temperature and respiratory rate, putting on new probes and generally stressing Chester out part started. 

All the time he was ratty and whinging all I could think about is the fact he made it and all went to plan and that was enough to allow me to listen to the whinging and whining noises he was making and be incredibly grateful.

This was a pretty tough decision for me as a parent, to put my child through something like this, to change him forever, to give him something that straight away makes him look “different”, but having just had one day of painless and stress free IVs I know I have made the right choice for Chester.

This little one has bounced back time after time, the resilience he shows amazes me, no matter what CF throws at him he stands up to show CF who’s boss, he’s by far the strongest person I know. I can’t help but think about the path ahead for this little guy, he’s already been through so much, I really hope CF gives him the break he deserves, but even if CF doesn’t I know Chester will kick arse and give CF a run for it’s money because he’s alr day showing he’s more than capable! 

The night before port surgery. 

No one ever said parenting would be easy, but I never imagined it would be quite this hard, all the angst and worry, the endless doubt and worst of all, the millions of decisions you are expected to make as a parent. Always wondering and hoping the choices we make are the right ones for our babies. 

I have made the decision to put my son through what will most likely be a pretty traumatic ordeal tomorrow, something that I know will be painful and upsetting for him and something which he is too young to understand at the moment and I am wracked with guilt over it. I keep asking myself over and over, is this the right decision? 

I know that he needs this surgery and once the port is in, longterm it will mean his admissions are far less traumatic with no need for cannula changes every day, but even knowing this and hearing others success stories hasn’t made the decision any easier and hasn’t taken that guilt away.  

Don’t get me wrong, I’ve been so grateful to the other CF parents that have shared their stories and shown me pictures of their children’s ports and I feel fortunate to have my virtual family around me providing advice and allowing me to ask questions and I thank them for that.

As I sit here this evening having packed our hospital bags ready for the morning I find myself looking over the list of 35 odd complications the Surgeon gave me, complications ranging from Port rejection all the way through to heart problems like tamponades and endocarditis, I wonder to myself if the risk outweighs the end result. You always hear surgeons say “With every surgery comes risk” but until you are given papers with them listed it doesn’t seem so real and I never realised there could be so many for one procedure. 

I’ve spent the majority of my evening staring at Chester’s topless torso, wondering how different it will look after tomorrow’s surgery, wondering where it will be placed and how prominent it will be. Then wondering how he will feel about adding another scar to his already patchwork body. I guess only time will tell and I am hopeful that one day he will be proud of his war wounds and I will have to tell him off for showing them off to the girls. 

For now I wait and hope that his bed is still available so I don’t have to spend another evening worrying and stressing about putting my baby through another surgery. 

When Cystic Fibrosis wants to remind you it’s still there! 

If there is one thing CF has taught me, it is that I shouldn’t get too comfy because the minute I do it will throw something into the mix to remind me it’s still there lurking, there is no good time for CF to raise it’s head but sometimes it just seems to choose the worst possible time! With Chester it’s usually around the time work is manic or we have a family holiday booked. 

So often people will say “Cystic Fibrosis? Really? But he looks so well”.  I have learned to take this as a compliment rather than allowing it to upset me, and I agree on the outside he does look well but we work incredibly hard to keep him looking that way, it’s sometimes easy to forget about CF because he does look so well.  It’s the underneath where we can’t see that is a whole different story and that’s the scary thing about CF.  It’s the not knowing and not being able to see that is the hardest. 

A week ago the decision was made to take Chester off his remaining prophylactic antibiotic, this is pretty much routine when children with CF turn two.  This antibiotic is something he has been on since birth and although very daunting, he has been well and not needed any back up antibiotics in quite some time, he has only needed antibiotic treatments to eradicate pseudomonas which his prophylactic antibiotic wouldn’t really touch. 

I saw this as a step forward, I see that he’s getting bigger and stronger, and I felt quite relaxed and proud of the fact that this is the first time since his birth that he has been antibiotic free, another step towards “normality” for us. 

So I shouldn’t have been surprised that given it’s September the season of coughs, colds and flu that not even a week later CF rears it’s ugly head to remind us that we are perhaps getting a little too comfy.   It started with a sore throat and now he has developed a terrible cough that is visibly painful for him.

All I can think about is the damage and scarring this constant coughing may be causing to his lungs.  With annual review not far off we will get to look back over this years’ treatment and compare his chest X-rays from one taken a year ago, always an anxious time for us and quite hard hitting for some when they see the damage CF has caused in the past year.

His awful sounding bark kept him awake last night and that coupled with a high temperature made him generally unsettled and he started to pat his own chest indicating to us he wanted and needed physio, so at 3am there we are like zombies giving him physio in the hope it will ease for him to catch his breath and get some sleep.

After some pain killers and chest physio he finally went to sleep sprawled on my bed resembling me after a night out drinking. 

I wasn’t overly content with how he was doing and with surgery due at the end of the week I felt I needed to check with the Doctors about starting him back on antibiotics.  A call to our local assessment unit where we are fortunate enough to have open access and I find myself talking to a staff nurse that knows Chester, I don’t know why that surprises me when he’s spent so long there and after a conversation with the on call registrar Chester is back on antibiotics.

A few doses and he should be back on track for his port surgery on Friday and there it is a quick reminder to me from CF not to get too comfy.