Not long ago, weeks after the funeral a non-descriptive letter arrived in the mail.
I got it out of the mail box and Luke gave me a sideways look, he had been trying to check the mail first, ever since they had told us we would receive the death certificate in the mail.
I probably rolled my eyes at him and handed the rest of the mail over.
Inside he called me over.
The envelope had nothing on the outside except Luke’s details.
Opening it, we found a second envelope, just as palliative care had told us.
In bold red lettering something like,
“This envelope contains a death certificate. Please open in the presence of loved one or other support person. If you need to please contact 1800….”
Whatever the number was.We had been warned, we knew it was coming.
I think I was crying right away, not bawling, simply tears running down my face. But I felt calm.
I read Matthew’s details, my eyes falling to:
“Cause of Death: HDAC2 Chromosomal abnormality – 5 years Central Apnea – 2 years.” Signed off by our beloved paediatrician.
Wow, I thought, that’s what we’re calling it. Makes sense, that’s what happened on the hardest day. He stopped breathing. Because his brain wasn’t sending the signals.
When I think of it now, I remember the first time I heard the words ‘Central Apnea.’
It was late one evening, at home.
I had been hovering over Matthew bothered by something. He was in bed, Luke was tired and headed to bed, he had work again early the next morning.
Matthew’s breathing wasn’t right, I called our on call Complex Care Hub nurse. She ended up asking me to tell her every time he took a breath. She was worried.
“Is he like not taking deep breaths? Hang up, call an ambulance, I’ll let ED know you’re coming.”
That night was also memorable because as the paramedics arrived, MICA paramedics in tow, they asked “Are you here alone?”
“No,” I said “Hubby is asleep in that room” I gestured to the room to the left “And my other two children are in there.” I gestured again to the other side.
The looked shocked. Yep this was a run of the mill night for us, the rest of the family still needed their rest.
Sometime after we arrived at RCH (probably hours and hours) the doctor on call for our team and an offside person where looking at Matthew.
I don’t remember who they were, often it didn’t really matter what they thought was happening,they would admit Matthew and any major decision making would be left for his home team.
The two of them listen to his lungs for ages as I explained what had unfolded trying to point to what it looked like when he took a breath. But each time we had to wait a bit before he actually took the next breath.
“…and that’s what’s happening.”
“It looks like central apnea.” They said to each other.
“What does that mean?” I asked.
“Well obstructive apnea is where you try to take a breath and can’t. He’s not trying, which means it’s a central problem, his brain isn’t sending the message.”
“Oh.” No one seemed particularly worried and they left after that so I brushed it off as the pondering of much less experienced doctors. The teams didn’t mention it again that admission.
One day, we’re in a pre-op anaesthesia appointment with Matthew’s Complex Care nurse. The anaesthetist scrolls down Matthew’s page. “Oh so he has central apena?”
The nurse and I looked at each surprised (but not actually shocked.) “Does he?” we chorused.
He looked confused, “yep, it says it right here. Added x date, by Dr. X”
I don’t remember the details but I recognised the name at the time, I told the nurse, “That was the night we came in by ambulance. Those two night doctors must have put that on his file.”
You could see his nurse making mental notes to chase this down.
“Well he’ll need an ICU bed.” The anaesthetic doctor continued on. That was standard practice for Matthew.
I think by the end of that very ICU visit, they ordered a sleep study to find out more.
That study revealed that he also had obstructive apnea, 14 times an hour while he was sleeping. The central apnea was there but not too concerning.
Matthew was put on CPAP at night after that.
The central apnea was mostly ignored for quite sometime. There was nothing they could do. They didn’t know why it was happening and it wasn’t effecting him very badly.
When we got the results of his final MRI, what they explained about his brain stem, showed why we had seen that deterioration of his central apnea and other things.
In the few weeks before he passed I had asked for another Respiratory team review, I had noticed increasingly that the sounds he made while sleeping got louder and more laboured. He often lost his colour, so I was using his CPAP machine more and more. Since around January, he had started to sleep more and more, so he spent a good part of most days on his machine.
When the respiratory doctor came to see Matthew and I, he was met in the hallway by Matthew’s team’s (General Medicine B) new registrar (they changed every 3 months, I always joked again and again, that 3 months was just long enough for me to train a new doctor), they had a brief chat and he left without coming into see us.
She said nothing to me about it.
Later when the Gen med team came back with the senior consultant, the consultant asked the registrar, “Did Resp speak to mum?”
She brushed it off, “No I spoke to them.”
“No,” he came back, “They need to speak to mum.”
It was moments like these that reminded me why I liked our team – it is the consultants that make the team.
So the Resp doctor came back, this time to see me.
We talked through the increasing respiratory symptoms that I had identified.
The end result of that conversation was yes, visibly it seemed that some of the symptoms where worsening. But that there wasn’t any point doing another formal sleep study because the only way to support central apnea is with BiPAP.
BiPAP is a step up from the machine he had, it is a face mask that covers his mouth and nose, and it forces him to breath.
Matthew had used that machine, in ICU, many many times. He hated it.
Part of his recovery from his many chest infections could be marked by how well he tolerated the mask. When he was really really unwell, he would just sleep and it wouldn’t be an issue. But as he started to recover he would fight to get the mask off.
We had conversations back in December about not even using in emergency situations as we knew that Matthew’s condition would worsen overall.
So there was no way we were going to make him wear that everyday, so we consciously chose to ignore those symptoms knowing the solution would make him miserable.
“Central Apea – 2 years.”
Wasn’t a shock, it was a trip down memory lane. A slowly evolving issue that we didn’t understand until 3 months before he passed away, then it didn’t matter because there wasn’t anything we could have done.