Don’t look directly at this post.

About a month ago I was driving and thinking about all the recent happenings in our lives. I’m in a new job that I love and that makes us much more comfortable financially; L is doing well; we have opportunities opening up ahead of us. I thought to myself, “You know, things are really going well for us.”

Now, that’s not a terribly profound sentence, but allowing myself to actually, deliberately form that sentence in my head is significant. The last time I deliberately formed that sentence in my head was just a couple of weeks before L was born, and we all know how that went.

I’m not going to pretend like I had some premonition that L had an undiscovered medical problem – on the contrary, I was totally blindsided by that double-decker bus of information – but I knew enough about complications and pregnancy loss to have my share of anxiety that something would go wrong. By the seventh month, though, that was dropping away, and I allowed myself that thought, and then BAM! Things weren’t going so well anymore.

Since then, we have not allowed ourselves to look directly at progress because as soon as we do it vanishes. “I think his poops are slowing down!” Poof. Liquid shit. “He’s finally tolerating whole bottles!” Poof. Liquid shit. “He’s doing great without any TPN at all!” Poof. Emergency blood transfusion. And, liquid shit.

So Z and I do an awful lot of talking without saying any real sentences, and we’re not always great about updating people. I know some of our friends and family would like to know a little more about what’s going on with him sometimes, but, well, liquid shit. For the love of god, people, think of our furniture.

So here’s an update, but I’m prefacing it with all this because I need you to know that when I say things are going well it’s really more like “things are maybe kind of sort of going well but it could go south at any moment or we might think it’s going well when really it’s going horrendously and please don’t expect much and maybe also don’t talk about it or think about it or look at it.”

So stop what you’re doing and hold this post up in front of a mirror and read its reflection. Or have a complete stranger read it and give you a quick summary. At the very least, put on some sunglasses.






Ready now?

Ok, here it is: We stopped TPN cold turkey 23 days ago. And it seems to be going well.

Sometime near the beginning of the year I didn’t feel like we were pushing forward very quickly, so I asked about trying enteral feeds to see if we could transition to that instead of TPN. Enteral feeds mean nutritious liquid is run through a feeding tube into the gastrointestinal tract (as opposed to the bloodstream with TPN) – what this boils down to for us is that if we could do tube feeds instead of TPN, we would be using the not-at-all-difficult g-tube instead of the bane-of-our-existence central line. And if it worked, we could get rid of his central line altogether.

GI had doubts, but I continued to pester her about it and at the beginning of March she agreed that a 1-night trial couldn’t hurt. So we hooked up the feed pump instead of the TPN pump and spent the night watching for vomiting, stooling out or distressed sleep (none!) and spent the next day watching for vomiting, changes in poop or changes in appetite (none!). To say the very least, GI was thrilled, and so were we – every time we’ve tried enteral feeds in the past it has inexplicably caused copious amounts of vomit.

So we’ve moved ahead with just enteral feeds and no TPN, replacing intravenous nutrition calorie-for-calorie with enteral nutrition. We’re still hooking him up to something overnight, but it’s easier to prep and it doesn’t have to stay sterile.

Now we wait. He has to prove that he can gain weight without TPN, and that he can maintain vitamin and mineral levels without TPN, and we need to keep his line for easy, needle-free access for frequent blood draws to check on these things for as long as it takes to prove he doesn’t need TPN, or to prove that he does.

We’re hopeful. No matter the end result, we can say with certainty that he is tolerating enteral feeds much better than he ever has before. Against my better judgement, I’ve already allowed myself to entertain the thought of summer swim lessons. But we’ve also tried ditching TPN twice before (without adding enteral feeds) – in 2014 he was off of TPN for 4 months, and last year we went a whole 7 months without TPN. The first trial period ended with an emergency blood transfusion and nearly two weeks in the hospital, and the second trial period ended with my two year old being admitted to the hospital because he got drunk from eating too much bread (yes, really – but that’s a story for another day). So we’re hopeful, but that hope is surrounded on all sides by this might not work.

And so we wait, for another month or another year. And we don’t look directly at it.

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3 thoughts on “Don’t look directly at this post.

  1. Pingback: Line free is the way to be….I think….probably….Yes, okay, we’re definitely maybe ready for this. I think. | this gutsy life

  2. Pingback: Gutsy Surgery: Six Months Later | this gutsy life

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