an exhausting trek
some answers, but more questions
and the beat goes on
Technically, we're not home yet, but we're in Texas. That counts, right? One more night away from home and then we pile all the kids and all the crap into the car and watch the pretty central texas hills fly by as we make our way back to Austin.
What a week. I'm not sure I can say we have more questions than we did before, we just have different questions. That shouldn't be surprising, but I fully admit it's frustrating. And there are still a lot of test results we're waiting on. Some will be back by the end of this week, others not for two weeks. Does he have evidence of pepsin and fats in his lungs (sure signs he's aspirating stomach contents)? What do the doctors want to do about his lungs? How long until we have to go back to Cincinnati? How many times will we have to go back? Does he have to get a lot bigger before he can have the reconstruction? If it's a weight thing vs an age thing, it might be years before we can do it. But if that's the case, what if actually having the trach in is hurting him while it's helping him? How can it be that our local ENT says the nature of having a trach causes aspiration and more secretions, whereas the Cincinnati docs say exactly the opposite? How are we going to manage our Austin docs when it appears a good handful of them are in clearly over their heads with this?
I won't bore you with the rest of the questions I have. But I will say that I am having some kind of mental block accepting one of the things the doctors told us: that it doesn't matter how these things happened to Ike-a-saurus. It matters how we fix them. Intellectually, I can understand this. But, psychologically, I want a road map. I want to know why and how things went wrong. I want to know cause and effect. What we have just been told is that we will never know the answers to that – and more importantly, we don't NEED to know the answers. I feel like I need to know, though. It is very very hard for me to accept that I will never know why or how this happened. Not sure why it's so hard. Maybe secretly I am looking for ways to not blame myself. Not that I really consciously do, but maybe somewhere deep inside is an almost invisible voice that says, "If you had just done this or that, things would be different."
I think that today we are definitely in a better place than we were this time last week. We know more even if it feels like we know less. It's a hard thing, accepting that we have a ways to go with all of this. It's tough to think about what Ike-a-saurus is going to have to go through to get his airway repaired. It's tough to think about the amount of time we will have to be away from the wee one and wee-er one while we're getting this fixed.
It's weird to think that my children will spend so much time having nurses in the house; that my three-year-old talks about suction catheters and my seven-year-old can explain what a trachea is and what it does. I have to hope this will all be good for them somehow.
I try not to go down the "it's not fair" path. But it's not fair. I have to work hard to think there is a reason for this, that it's not just random shitty luck. I have to work really hard at that.
Reading back over this post it sounds a lot drearier than I feel. Really, things could be a lot worse. We are very, very fortunate. If you learn anything from spending a week visiting one of the biggest children's hospitals in the country, it's this: holy shit could things be worse.
So now we just try to settle back into our routine. And I will try to stop brooding and start being funny again. It's boring to brood for so long.