Friday, 27 March 2015

My Beautiful (Vulnerable) Boy... (Age 4)

It was Adam's birthday, and I was racing down the A5 at speeds much higher than I'm prepared to admit publicly, following a phone call from the nursery manager saying my son's temperature was 41.8 degrees.  They were following emergency procedures and had stripped off his clothing, given him Calpol and two members of staff were sitting with him until I got there.  If his temperature had gotten any higher, he would have been in an ambulance.

I don't speed often, but a phone call like that on a day when I was at a meeting an hour's drive away from the nursery and speed compliance goes out the window...

It was ironic really because every year previously, Adam's birthday has been a very difficult one for both Chris and I.  We always want to celebrate our son's life and we cannot help but remember that his birthday is also the anniversary of his near death.  Both of us have, on many occasions, wondered how long it will take for the trauma to fade enough that we can just celebrate our son's birthday without looking backwards.  That morning had been the first birthday on which I woke up not feeling traumatised or on the edge of tears.  I can't say I was particularly impressed when my dear son decided to start his fourth birthday celebrations at four in the morning, but I was actually happy - and very aware of that fact.  

It felt like a good place to be, we gave him a "biiiiiiigggg huuuuuggggg" (his latest phrase, from Teletubbies) and helped him to explore his new "dark den".  For those who are unfamiliar with these, a dark den is basically a big blackout tent filled with sensory lights.  The idea is dual purpose - it provides a calming, dark place to help an autistic child calm down during a meltdown but in play purposes, it also allows him to explore with his senses - to experience different types of light and explore what light means.  In other words, it was an ordinary birthday morning, exploring presents and new toys.

Adam had been sick, having come down with a temperature on the previous Sunday, so we had kept him off school on Monday and Tuesday but he wasn't showing any other signs of illness, other than very broken nights - but those aren't unusual in his world.  With such limited communication skills, Adam can't tell us if he's feeling ill or if anything hurts so all we had to go on were visible symptoms and energy levels.  By Tuesday, he was bouncing off the walls and clearly completely bored of being at home, so on Wednesday, with a normal temperature, we decided to send him back to nursery thinking he would be fine.

That phone call plunged us both into panic mode and as I raced home from Oswestry, Chris raced back from his office in Stone.  Very unusually, that day, both of us were nearly an hour away from him and cursing that fact.  

By the time I got to nursery, Adam had fallen asleep in a pram but I was very grateful to see two members of staff sitting with and monitoring him, one of whom was the nursery manager.  As I held my hand over his chest, I could feel the heat radiating off him - clearly the thermometer had been accurate.  Standing in the nursery, I rang the doctor who asked me to take his temperature again - thankfully, it had dropped slightly but it was still 39.1 so she instructed us to give him neurofen as well and to bring him in.

This was a very hard moment for me because it was by then 1:20pm and I was leading a school Easter service at the church at 2:15pm with 200 children and over 200 parents.  I had no choice but to take Adam home where Chris was waiting, give him all the instructions he needed and go back to work.  I gave my mobile phone to our verger, asking him to signal me if Chris rang.  It was a horrible moment of desperately wanting to be with my son, but knowing I had a job to do.

By the time I got home, just after 3pm, they were back from the doctors and Adam was asleep on Chris.  By the time the doctor saw him, Adam's temperature had dropped to a nearly normal 37 degrees and, despite a complete examination, the doctor couldn't find anything wrong with him - ears, throat, chest, all normal.  

Unfortunately though, the doctor made an offhand comment to Chris (possibly not realising our history) that really shouldn't have been made.  Expressing his surprise at how high Adam's temperature had been, the doctor said, "Did you know that egg white cooks at 42 degrees?  The brain is made of the same basic material...."  I hope - I really hope - that he didn't realise Adam had neonatal meningitis and that, one of the many symptoms of his illness was an extremely elevated temperature or that the CT Scans taken in NICU showed brain damage as a result of the inflammation of his brain.  If he did realise that, then to say that such a comment was insensitive would be an understatement.  He's a good doctor, but we're new to the surgery, so even though all of Adam's notes are on the computer, I hope he just made a mistake through not knowing us well enough to realise the effect of what he was saying.

However, in the absence of any other symptoms, all the doctor could suggest was Calpol, Calpol and more Calpol and to ring if Adam's temperature rose again.  So Adam slept...and slept, and slept and slept.  3pm until 7:30pm, briefly waking to lie lethargically on my lap before going back to sleep at 9:30pm.  Anyone who knows us, or has read this blog over time, will know how unusual this is for Adam - he doesn't react to illness by sleeping, so that much deep sleep was incredibly worrying for us.  As a result, while he slept, all of my ability to cope and to hold it together abandoned me - I went to pieces, unable to stop myself from reliving the trauma of neonatal intensive care, of watching my son "shiver" with extreme fever and once more wishing I had known then what I know now about Group B Strep and so had been able to prevent my son's life threatening illness...and near death.  

Chris mopped up my tears, held my hand and ordered me to ring Wendy, even though it was out of hours.  We checked on Adam every few minutes.  Finally, allowing ourselves to sleep, the night was brief as Adam woke up at 2:45am and refused to go back to sleep until 4:30am.  We were both utterly exhausted and very much in survival mode.

Needless to say, now two days later, Adam is thankfully much better and it really must have just been a childhood fever, likely from a mysterious virus.  He's still having medication, now coughing so inhalers too, but is back to his usual energy levels.  Yesterday afternoon, he even came up to me and, for the first time ever, looked up and said hopefully, "School?"  

So this morning, I've sent him back to nursery after a long conversation with his teacher, and I'm confident that she will ring if he doesn't seem strong enough to be there.  

Four years old, and clearly still as vulnerable as am I.


  1. I can relate. My daughter is now 7 and lives with a brain injury as a result of contracting GBS Meningitis as an infant. My heart stops when she shows any first signs of an illness. It is so stressful when you know how badly it could go. I can't stand it when people say things like "What's the worst that can happen?".

  2. Thank you Kristine, I think you hit the nail on the head - the is such a flippant question, and generally asked by someone who has never walked through "the worst" so can afford to be flippant.


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