Results.

Sunday morning was made ever more fun by a phone call from the coroner. Brandon and I had known for awhile that we *could* call the coroner and presumably learn something but….it wasn’t a call that either one of us was strong enough to make. So we let it sit a bit longer than we’d meant to. Finally we decided to have our family doctor, the lovely and talented Dr. W make the call for us. She did, but didn’t hear back….and I guess the coroner decided to call us instead. 

Sure enough….results. In a rather bittersweet twist, the blood clot that formed around his umbilical catheter and cut off the blood supply to the entire lower half of his body was not what caused his death. In fact, the hail mary pass we did at the end – the insane drugs we’d injected to try to dissolve the clot – they worked. By the time the coroner saw his body the clot was gone. I don’t know why that makes me happy, but it really does. 

The thing that caused his death was apparently necrotic entercolitis – a condition where sections of the intestines basically go necrotic. I am struggling with this one because apparently it’s not an unheard of condition in preemies. And yet, no one mentioned it to us as a possibility – not even once; not even when we discussed his bowels because they suspected something was wrong. He wasn’t pooping enough and he wasn’t tolerating his feeds very well. They even did that barium test twice – the one they use to xray and check if he had any malrotation (which is a really common condition in preemies, where the intestines get twisted and need minor surgery to correct). It was never a term that was mentioned and it didn’t seem like from the things they told us and the things they did that they even suspected it.

I say that for a few reasons – one is that when the second barium test came back clean the day before he died, they started doing milk feeds through his NG tube again. That is, from what I’ve read, *not* something they would have done if they’d considered this condition a possibility. Two is that when we rushed back to the hospital the night he died after his heart had stopped for so long and they’d revived him, they had *no* idea what was wrong. The doctors couldn’t figure it out at all; they were raising different possibilities and considering different options; calling in various specialists…but they didn’t know. It wasn’t until the third ultrasound revealed the giant blood clot that they thought they understood. If this other thing was really such a common problem then wouldn’t they have mentioned it?

I don’t mean to sound angry – I’m not really, not at this. I have very little doubt that even if they had known what it was and told us about it that it wouldn’t have changed anything – I don’t think he could have survived it. The poor little guy just had too many counts against him I think. 

I just want to understand why this didn’t come up to us. We discussed a lot of different possibilities and if this is common enough that they see it periodically…then….why? Why not mention it? Why not look for it, or consider it? And if they did, why not tell us about it? That’s what I don’t understand. If the answer is “this just didn’t present normally” then okay. If the answer is “We screwed up – we should have looked harder and we had blinders on.” then also okay. 

I’ve wrestled over the past few days about why I care – why it matters. After all, the really good news out of these results are that there is really nothing here that could affect a future pregnancy – nothing points to an underlying genetic condition or anything like that. Which also means that we probably don’t have to worry that Anika has something we need to worry about. 

It doesn’t matter really how or why Oliver died because he did and that isn’t going to change. The thing I keep coming back to is what would happen if, God forbid, another baby needed to spend some time at the children’s hospital? I want to trust that those doctors and nurses did absolutely EVERYTHING they could have done. Everything. That they thought of everything; considered everything; are *still* the competent, thorough, and effective doctors that I believed them to be. I don’t want to walk in there with diminished trust in what they are doing – because that wouldn’t help anything. I’d be lying if I said I thought I could walk in there in another circumstance and not be scared – I’d be so scared. But…there’s a difference between being scared and sad because you know how bad it can go – and being scared because you don’t trust the doctors. I want to trust them. 

Brandon and I have to decide how far we’re going to go in seeking answers to these questions. I would like more answers but I don’t want to be consumed by a quest for information that has no bearing on us now anyway. 

I’m glad we know the results now at least. I can stop dreading the phone ringing, fearing it’s the coroner.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: