A reader’s introduction to the adventures of Frankentestine: Part 2.

During the 131 days we were in the NICU, I thought we would be there until L was fixed and then we would go home and start the regular babyhood I had imagined, just on a delay.

In many ways, the hard part didn’t really start until we went home.

This post is not intended to catalogue exactly how and why things were difficult, or how deeply we felt those difficulties. That can come later, and gradually. I have, however, realized over time that many people – even people close to us – don’t really understand the basics of what it takes for L to stay healthy. I was floored when an uncle asked me how L didn’t get dehydrated with all the pooping, for example, when so much of our world was wrapped up in the IV fluids we administer every night. And just last weekend I realized that L’s great-grandmother didn’t even know he had a central line, let alone what that meant.

So here are the basics.

L’s gut doesn’t work well. He only has about 20% of the small intestine he should have, and what he does have doesn’t function as well as it should. Remember our old buddy Frankentestine? All those sewn together bits mean a whole lot of scar tissue, and scar tissue doesn’t absorb liquid or nutrients. It also means pieces of tissue that shouldn’t really be next to each other have to learn to communicate and work together, so motility (the ability of the intestine to move food and liquid from stomach to bum) was really, really poor at first – and then when it started to pick up, boy did it ever pick up. In the first few months home from the hospital, he went from regularly vomiting huge amounts of dark green bile because his gut couldn’t move it through to pooping pure liquid 15 times a day because he didn’t have enough gut to slow it down.  

All of this means that he has needed help to stay hydrated and nourished. A lot of help.

Since his NICU days, before he was really eating or drinking anything at all, he has had two surgically-placed devices that allow us to hydrate and nourish him despite his Frankentestine’s best efforts to make that impossible:

Central Line: Also known as CVL, CVC, central venous catheter. Broviac and PICC are two types (L has had both). It’s not a port, but it’s kind of like that. This is a semi-permanent IV line that goes straight into a major vein. It requires surgery to place or replace (which we have done six times now).

L’s central line allows us to deliver TPN (intravenous nutrition), which gives him more or less everything he needs to stay nourished and hydrated. We were able to gradually cut the number of hours per day he needed to be hooked up to TPN by more than half, but for most of his life L has received TPN nightly, at home, with Z and I serving as his nurses.

We have a love-hate relationship with L’s line, in a big way. It has saved his life; he could not have survived without it. We even personified it, way back at the beginning when we had never known L without an IV pole tagging along. Her name is Ivy (see what we did there?).

But at the same time, it has been the bane of our existence. Ivy landed us back in the hospital 4 times in six weeks shortly after we finally, finally brought him home from the NICU. And we’ve been back in so many times since then that I’ve lost count.

Because a central line goes directly into a major vein, it’s a huge infection risk – and small children can go septic FAST. This means that as long as he has a central line, every time he has a fever we have to spend 48 hours in germ-infested medical prison trying to convince L there are more fun things to do than repeatedly flush the toilet on isolation at the hospital waiting on blood cultures to rule out line infection. Every. Single. Time. We have been admitted for ear infections; we have been admitted for colds; once we were admitted for what the unit pediatrician concluded was probably teething.

Having a central line means that he has to keep the insertion site covered with a sterile dressing. We do sterile dressing changes once a week, in our home. These were no picnic with a squirmy baby, and they are decidedly worse with an opinionated toddler. Because the dressing needs to stay intact, his chest can’t get wet, so L has never been swimming, never played in a sprinkler or splash pad, and only very rarely gets a real bathtub bath, when we have time to waterproof his chest and then change the dressing immediately after.

It also meant we couldn’t access childcare for a long time, until we found a center founded by nurses that was equipped to take care of him with a line. He’s in a regular room, but they have RNs right down the hall who can be there at a moment’s notice. Regular daycare centers wouldn’t have been safe for him because they aren’t trained to handle line care, and they wouldn’t take him even if we were comfortable with it; because of his line, he’s a liability.

G-Tube: Also known as Mic-Key button, g-button, gastric tube, feeding tube. This is a tube that goes directly into his stomach. It looks like a beach ball valve and is held in place with a little balloon on the internal end that we fill with water once it’s inserted. It can get wet. It doesn’t have to stay sterile. It doesn’t require any ER visits or hospital admissions unless a rare malfunction/misplacement arises. If it falls out, we just pop it back in. It’s much, much, much easier to manage than a central line.

L’s g-tube was placed at his last big NICU surgery. At first we only used it to vent his belly, which means it allowed us to let out some of the goop that wasn’t able to pass through before it built up enough to make him vomit. A lot of kids will transition from TPN to continuous tube feeds, which means hooking a pump to the feeding tube that runs a slow, continuous trickle of nutritious liquid (breastmilk, formula, PediaSure, liquified whole foods, etc.) directly into the stomach. In theory, this is easier to absorb than drinking a large amount all at once. For L, it inexplicably made him vomit, even when he was drinking much larger volumes than we were running through the tube. So we’ve been using it for vitamins and medicine and small amounts of certain pureed foods that help us micromanage what’s moving through him. And to be honest, it’s pretty nice to never have to make a toddler take medicine.

Here’s a very clinical diagram of L’s essential medical anatomy:

The end goal is to get rid of both of these things. That’s priority #2. (And yes, you can go ahead and assume that it’s deliberate any time I say #2.) The line should go long before the tube, but eventually they should both be able to go.

Priority #1, though, is keeping him healthy, and he still needs these things to keep him healthy. Now that he tolerates most foods and he drinks a normal amount of liquids each day, we constantly micromanage his intake in order to micromanage what comes out the other end. But he still needs a boost from Ivy and his g-tube.

We’re working on it, though. And things are happening. More on that next time.

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