This was part written around the time, filled in and completed in bits a bobs retrospectively, and then published weeks later.
Since the last post of us being discharged from our long stay in hospital. Jaxon was out for just 8 days before we were back in as he had stopped taking his milk and was more sleepy than usual again which I now knew to be an indicator of his sodium dropping. We were discharged after a couple of days and got a glorious 13 days home before returning again on 28th October 2017 for reduced feeding which turned out to be because of a urine infection that was resistant to most antibiotics (typical).
On the Wednesday 8th November I spoke to my sons lead consultant about how well he was doing, he was better than we’d ever seen him. We were looking at discharge from our third hospital stay when his consultant said “but you know, this is Jaxon, so lets see how he is Friday”. She was right, Jaxon had spent most of his life in hospital; a 4 night stay, a one night stay, a 6 week stay, a five day stay, and now we were a week and a half into another stay – he’d only been born 12 weeks ago. So everyone at the hospital knew him and we were all on the same page. Lets keep him in a couple more days because we don’t want to go home and be back in tomorrow. He was born in August, it’s November. We want to go home for good.
So that day, with him doing so well, I nipped back to the flat I’d got the keys to whilst being in hospital. I needed to start unpacking and preparing for us to be discharged (yep, during this whole palaver somehow I’d moved cities). Whilst I was out, his consultant requested a repeat echocardiogram. I wasn’t informed or I would never have gone out but retrospectively I was pretty happy with this. My son had a small VSD (a small hole in his heart) on an echocardiogram when he was around one week old, which most doctors were confident was common in newborns and would heal itself. They were so unbothered by it they suggested a follow up in 6-9 months, but his consultant figured whilst we’re still in hospital, lets get a cheeky early check on it. So this scan was just to see how that was going. Jaxon has never been medically consistent with expectations but this one really blew it out of the water. I returned to hospital and entered our room to find doctors and nurses around his bed connecting him to a monitor.
The echo to check on his little VSD revealed hypertrophic cardiomyopathy. This means his heart is abnormally large due to the walls of his heart thickening.
With my nursing history I knew this was serious. I called his Dad. I felt the waves of fear wash over me and let the tears flow momentarily. The call maybe lasted 5 minutes maximum, then I wiped my tears and returned to his side. From then nurse Kaytee was back; what’s the plan? Propanolol? Okay, what dose? What’s the management?
I asked his consultant if this was life-threatening. She told me the only way this is usually found is on an autopsy when an athlete has suddenly dropped dead, and then they screen family members for it. It would shock many that she said this and doesn’t sound like something I should have been told but I appreciated her honesty, I like to know what I’m dealing with. They knew this about me by now.
They took 27 bottles of blood from him to send all over Europe for a long list of genetic conditions, most of which are extremely rare.
The next day, Thursday 9th, a Geneticist came to see me and take a family history; nothing exciting showed up from our conversation alone. I have no family history of genetic conditions and nor does his father. The geneticist explained some of the tests to me a little better and mentioned a few things he thought it was; Noonan syndrome or Pompe’s disease. By looking at Jaxon he didn’t think it was Noonan’s due to distinguishable facial features that Jaxon didn’t have.
On Friday 10th November I was expecting a visit from a paediatric cardiologist from a hospital I had a lot of faith would know what was wrong with him, and what to do about it. So that evening the specialist came and amongst a lot the uncertainty of prognosis due to not knowing the cause, she spoke the words:
“This is serious. He is at high risk of sudden death in his sleep any moment.”
“Okay” I replied, like she was telling me the weather outside. She then went on to explain I should be trained on basic life support before going home, we should have a heart monitor on him at home and that there was no reason to keep him in hospital as there was nothing they could do about it other than the medication he was being given. She mentioned something about surgery depending on the cause but how that was an absolute last option and I did not want that. But the tests would take weeks or months? In the meantime, other than trying to lowering his heart rate with medication..he could die, or he could not? But we could go home after a weekend monitored on the medication? Huh?..
So then, after 6 weeks of impatiently waiting and repeating “smile for me baby” with a smile so large my face hurt, in the midst of hell, he smiled at me. And I tried to digest the happiest moment I’d had since he was born and the words no mother ever wants to hear, at the same time.
Please comment with your thoughts and opinions reading this. Your feedback is what keeps me posting and writing is proving to be a helpful therapy for me right now. A therapy I wouldn’t be indulging in without your interest.