Home

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.

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11 thoughts on “Home

  1. Whether it’s brooding or funny or venting or crusading, it’s YOUR blog and we are just happy to be included in some small way. You are ALL loved so very, very much and we are encouraged and amazed by your strength and Ike’s precious smile and the resillience and fortitude of the wee and wee-er ones. Smooches!

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  2. I get the need to know thing. Our neuro just told us the same thing–we will never really know why Cody is going through what he’s going through. I think you’re right-somehow I am trying to find ways to assuage my own personal guilt. Anyway, just wanted to put that out there. Let us know what you need now that you are back!!

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  3. Yeah, whether the doctors and you *need* to (or ever will) know why everything happened in order to make things better has no bearing over whether or not you *need* to know why in order to set things right in your mind.
    I know I want to know why a lot in hopes of putting the insane arguments that go on in my head to rest if nothing else. Whether it’s knowing yes, I could have done this or that better or knowing there’s nothing I could have done that would make a difference either way just knowing would put an end to that particular mental conflict.
    Of course I’m sure my brain would find more 🙂 There’s always gotta be *something* keeping me up at 3 in the morning….

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  4. do you know even if the stenosis is congenital or acquired?
    you are perfectly entitled to sound and to be downbeat nevermind the fact that this is your blog 🙂
    but i guarantee that the trach doesn’t get in the way of much if you don’t let it, that ike can accept it as part of him, and that really it is a great life-giving thing.

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  5. I’m so with you on the need to know stuff and the crappiness of dealing with conflicting opinions of DRs. Have you had a look at some of the UK stuff on trach-kids? Let me know if you’d be interested.

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  6. Welcome back. I know that you mean about wanting to know why. Why is Ike in this situation? Why does my daughter have mixed up chromosomes? I sometimes remind myself that knowing why is not going to change what’s going on now. There are some medical mysteries – I just accept that ours is a random, rare thing and someone in the world has to deal with it and guess what – it is my daughter and our family.
    You are totally allowed to brood. I think we would not be human if we didn’t brood every now and then.

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  7. One part of this post really resonated with me: having a nurse in the house all the time being weird for the kids.
    We had a home health nurse at my house 12 hours a day for 3 years when I was 13-16 and my youngest sister was 7-10. Two of those years, it was the same woman almost every day, which was really nice, actually. Barbara knew all about our days too, and we’d all sit together w/my mom and watch Oprah when we came home from school.
    I remember specifically thinking, “wow, other people probably think our family is completely abnormal and weird, but it’s normal for us, and it works, so whatever.” And yup, we all understood ambu bags, respirators, tracheostomies, GI tubes, and all the other weird things that go along with medical issues.
    So, all that is to say, really, don’t worry about the having-nurses-in-your-house-all-the-time bit. It’s your normal, and that’s okay. 🙂

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