Preparing for the day

Some days you just know are going to be tough and you just know are going to suck.

There will be an event on your horizon that you look at and say, yeah, that’s going to make for a shitty day.

You try and prepare yourself if you can, but often you just can’t.

I’ve been preparing for today for a bit over a year, since I stood in a hospital hallway with our head neonatologist and agreed to allowing an autopsy for Reilly. I told the doctor that if there was something we could learn to help other babies with CDH in the hospital, or anywhere, then we should learn it. I meant that then, I mean the same thing now.

We received the preliminary autopsy report late last spring or early into the summer. We had to jump through hoops just to get that, finally getting a copy from Veronica’s doctor’s office. The preliminary report was just that though, preliminary, no real conclusions, just some raw information. It was enough to raise questions though, questions that we would need the full report to answer.

It wasn’t until September that we received the full report.

If you have never read the full autopsy report for someone you love, don’t. Let your family doctor review it and tell you what you need to know. If you need to investigate further, hire someone professional as an advocate for you and let them read it dispassionately.

I’ve read a couple now, the one for my mum and the one for Reilly. In both cases I have learned a lot, but also in both cases I have wound up with more questions than answers. With my mum’s report I looked up what I needed to know, and knowing that the information wasn’t going any further than that, I let it go.

With Reilly’s report though that wasn’t going to be good enough. I am committed to learning everything I can and being sure that that information gets back into the medical community to teach doctors and to improve the chances for survival for every baby born with CDH.

So, we first asked Veronica’s doctor to review the report, call us and walk us through what it said and answer our questions. That was frustrating, she simply didn’t know enough about CDH to answer anything usefully and we had to teach her what some of the information meant.

Then we started the process of getting a formal review done with the head neonatologist at BC Children’s and Women’s Hospital.

I’ll admit up front that I pursued this less than diligently. I sent emails and made the occasional phone call, but I didn’t go and force the situation. It never seemed like the right time, you know?

We were going on vacation in November, then there were birthdays, and then it was going to be Christmas, and then everyone is on vacation, etc…

Finally, we were at BCCW to drop off a box from CHERUBS that we had bought for the NICU to get information to parents of CDH babies. Just when I walked into the hospital the neonatologist called me back out of the blue. We were in the hospital, he was in the hospital, so we arranged to meet.

During that meeting we went over some basic information about the autopsy with both of us working from memory. Some questions were answered, some tough questions were asked, and we said that we would meet again for the formal discussion.

We had enough information also to book a meeting with one of the hospital leaders to talk about consistency in care issues that came up while Reilly was at the hospital.

And that brings us to today.

Today Veronica and I are meeting at the hospital to do a formal review of the autopsy and figure out what there is to learn from it.  We will also meet with others from the hospital and figure out our next steps.

I am dreading the day in a lot of ways. My biggest wish is that I could just do this myself and leave Veronica at home and out of it. It is going to be painful and difficult going through the autopsy report and while it is necessary, it’s not something I wish upon the woman I love most in the world. I’m OK with being a controlling chauvinist on this one.

I also dread the sure knowledge that after we learn all there is to learn from the autopsy, we have to move onto the next stage and our next steps. We’ll figure out what those are, but I anticipate it will be a difficult time.

So we have both taken the day off of work and we are dropping Lachlan off at daycare in a bit so that we can just handle the day together.

It’s going to be a tough day.

Sean