This day two years ago Dylan stopped breathing on the entrance way floor at playgroup.. it’s not a day I’ve talked much about previously in too much detail but I feel today is the day I share that story with you all and recap the events..
Previous to the events of February 10th 2016 Dylan had already had two collapsed lungs. We had been told it h a ‘big deal’ by some friends and families and the whole situation had been shrugged off by most people. I had become some what shut down and wouldn’t talk about the reality of the situation because it had come as a huge shock to us that our previously healthy boy was suddenly so seriously ill, so nobody really knew the truth. The truth was very bleak.. we had been shown a hopeless looking scan of Dylan’s ‘swiss cheese’ lungs and told he likely had only months left. How do you process that? How do you tell people?! The doctors were looking into lung transplant but that would only buy him extra time, if he even made it to the operating room. I was broken and just trying to live moment by moment.
I took Dylan to playgroup on the morning of the 10th for the first time since it had all started. I needed to talk to somebody and I had been attending that particular group for nearly six years with both boys so they were like family. We had probably been inside ten minutes when Dylan started to get upset. I checked his oxygen levels on the monitor and they were getting low so I called for an ambulance. I describe Dylan’s symptoms and medical history using all the technical medical terms which I don’t feel the call handler knew so I was passed over to be ‘called back’. After ten or so minutes passed he started to get worse so I moved into the lobby area with him and two of the helpers from playgroup, one of which was a health visitor, and previously a nurse, so she had medical training. I phoned 999 again and got told an ambulance was on it’s way. After ten/fifteen more minutes I phoned again, knowing that we were clearly NOT being treated as an emergency as we were only a short distance from the hospital. By this point he had been sick and started to get very distressed. He passed out and stopped breathing whilst I was on the phonecall. I knew how to do CPR in principal but in that situation instinct takes over and I asked and Caroline from playgroup, who I knew was trained in Basic Life Support, if she could administer mouth to mouth etc whilst I stayed on the phone.
Luckily he started breathing again after a few rescue breaths and I counted out his resp rate over the phone. His breathing was shallow though and he was looking very grey as is consistent with low blood oxygen levels. A paramedic car turned up a few minutes later at the same time the ambulance did, they took one look at Dylan and scooped him into their arms and ran across the car park with him without saying a word to me. I don’t think they had been relayed the severity of the situation either because they were not prepared and clearly shocked. The put him on oxygen and read the medical notes I gave them as we sped to the Royal Derby Hospital with me in the front. And I will tell you now the way people drive when an ambulance is trying to get through is SHOCKING!
I’ve been previously told how ‘calm’ I was during all this. The reason why is quite a sobering one.. I thought that his time was up so what good was screaming and panicking. I could try to save him yes but truthfully I thought he was dying there and then. I actually clearly remember when his eyes rolled back into his head saying ‘here we go this is it’ to myself. I’d prepared myself for that moment for the last month.
When we arrived at Derby I was met by a VERY rude consultant who point blank refused to phone QMC as per his medical alert because ‘he was not going to make it anyway’. I can’t quite remember at what point he was intubated and ventilated to be truthful because I was an emotional wreck by this point. All my calmness had faded and whilst they were working on saving him my emotions took over finally. I do remember some things from that resus room though. They did an X-ray and one lung was collapsed so they put a drain in and somebody did phone the QMC. They then did another X-ray to check the drain placement and the other lung had collapsed too. By that point the PICU consultant and team from QMC had arrived and took over to do the second drain. I remember the consultant being highly amused when Dylan briefly woke up and tried to “help” as he found the lady at Derby to have been a bit rude also. Don’t get me wrong the situation was dire and he was fighting for his life, but she was very blunt and basically told me he was probably brain dead!!
They took him via ambulance to the QMC but I was not allowed to travel with him. My parents took me over and my sister went to fetch Bryce from school...
You see whilst all this was happening Mike was actually out of the country!! I haven’t talked much about that either because certain aspects of the day aren’t public knowledge still, but Mike was in Barcelona on a work conference as I had assured him that ‘Dylan would be fine for two days’ how wrong was I though?! Thankfully they flew him home very fast and got him to us by 9.30pm that evening but let’s go back to the main story now..
When I arrived at the QMC I wasn’t allowed to see Dylan. They were too busy trying to get him set up on all the machines etc. Then rather swiftly I was lead into a side room by Dylan’s Respiratory consultant and again I thought ‘this is it, this is where you tell me his time is up and we got weeks not even months’! But no.. instead I was introduced to his colleague as being an Oncologist. The exact words out of my mouth were, “you know what’s wrong with him!” and I was actually relieved to be meeting an Oncologist which most Cancer parents hate me for saying.
The rest of the story most of you know... He started treatment instantly. Mike arrived with us by 9.30pm and he had stabilised, he had a bad turn the following morning in the early hours but the doctors and nurses fought to stabilise him again. He slowly improved and was extubated on Valentines Day. Then of course he was stable for a short while on the wards, before he stopped breathing again in March and then there were the horrific weeks that followed and his recovery process.
Of all the occasions that Dylan has nearly lost his life (including the day he was born ironically - he always was trouble) I find this one of the hardest. Even though it is not by any means the worst memory I have, Easter weekend wins that hands down, it happened in a place that means a lot to me and a place I still regularly attend with Logan. It took me a long time to be able to walk through those doors without experiencing flashbacks of it all. It also felt too unfair, like we had had such little time to process how poorly he was and we hadn’t done the things we wanted to with him. We thought we had more time. Unlike over Easter weekend where he was visibly suffering, he didn’t even act unwell.. Sure he had lost weight and was looking paler but up until 10am that day he was still the happy, playful cheeky boy we knew so it was hard to accept (and easy to forget) he was so seriously poorly. It also marks the start of the downward spiral that lead to Easter weekend. Even though of course it all started in the December, this time he stayed in hospital throughout with no respite and constant chemo and life threatening occurances. It was the start of him fighting for his life..
But here we are, two years after the day I really accepted he was going to die, and he is still here kicking ass!! Sure he has some issues and we live with the fear of relapse, but he is doing so well at the moment for the most part, we try to focus on living life in the moment and to its fullest. He had his first swimming lesson today and loved it, all through chemo that was what he was looking forward to most! He has also had a funky new haircut today so looks super smart ready for his Valentines disco on Monday.
We really are so very lucky to have him with us, he is a true miracle and amazingly strong. And his big brother is also one of the bravest kids I know, having to face saying goodbye to his brother (and best friend) has left him scarred in ways but he is truly amazing how he has coped with all this. And little Logan has been thrust into this world with no choice but is so happy and laid back it’s unreal, he brings a little laughter and sunshine to our world on the bad days.. <3
