Tonight I watched Cyrus eat some ham, the lunch meat kind. He was enjoying it. Asking for more. When there comes this gurgle from what, to an untrained ear, might sound like his stomach. But. It’s in his throat. Deep down there. It’s like one of those inside kinda weird burps we’ve all had happen to us, if maybe just once. You know what I’m talking about.
Then, after some strange head rolls, the ham pieces and a bunch of spit came out of Cyrus’ mouth. I don’t really know how to describe what he does. He’s not able to vomit like the rest of us, because of the Nissen, but his body still acts like it can. That’s when stuff comes up. But, it doesn’t actually come up. I mean, I guess it’s moving upward, but only from somewhere in his esophagus, not his stomach. So, it’s usually just spit mixed with whatever he just ate, though not always chunky if the food’s chunky.
The big surgery he just had 4 weeks ago was supposed to correct this. Yet. Here we are.
After he spit into a napkin and a bowl, he apologized for doing it. And later as I was tucking him into bed, he apologized again. I asked if he did it on purpose. “No, I think it’s just my body,” he said.
He also apologized not too long ago when he was lying in a hospital bed, attached to the machine with all the vitals and beeps, a feeding pump, an iv bag. “I’m sorry that I’m here,” he said. As if it were his fault. As if he chose that for himself.
When really I chose it, didn’t I?
Cyrus’ first Nissen was done when he was still in the NICU. The doctor seemed very optimistic about it helping him eat. You see, they’re done when patients suffer from severe reflux. Cyrus was refluxing so badly and all the time that he was aspirating it. And then breathing faster and therefore aspirating more because we kept shoving a bottle in his mouth. The feeding tube was the answer to the question you were asking, “When does he get to come home?” All he had to do was eat to leave. Or have calories. So, after 4.5 months of him living at the hospital, the decision was made to place the feeding tube and do the surgery. I was part of that decision.
Part of a decision that has affected his ability to eat since, well, forever. I didn’t quite understand what a Nissen meant for him in the long run. I knew it would get him home. I was under the impression that eventually they fail and then everything is normal. I didn’t realize he wouldn’t be able to burp or puke. As a baby, he never “spit up” after he was 37 weeks gestation. The surgery, I just learned, can never really be reversed.
He retched. He basically dry heaved all day long. Doctors didn’t know why or didn’t care. It was awful. He’d gag and gag. And his little face would turn red. Nothing would come up. Because it’s not supposed to.
I’ve never known what it is to have a child who pukes in the middle of the night. I’ve never heard him burp.
I have watched him doubled over in pain. I’ve seen him eat things he loves only to have his body reject them immediately. I’ve heard him tell people, “my doctor says I can’t have crunchy things.”
I’ve heard him apologize to me for being in the hospital. To me.
This last surgery wasn’t really a choice. After a dilation, the surgeon poked a hole in his esophagus. It sounds so awful. But it was written on the form I signed that it could happen. And it did. So. They had to cut him open and fix their mistake. Along the way they decided to redo the fundoplication, which I understood was causing all of the issues and was going to be undone. I’m not a surgeon. I didn’t get to make that call. I wasn’t even informed until after it was over.
And therein lies my anxiety.
I have been Cyrus’ mom for six beautiful years. Of those years, it feels like I haven’t been in control. I know, you might say you aren’t in control, either. But I mean, major, life-altering decisions are made by his nurses, doctors, and therapists. Maybe you think that’s melodramatic. For the first 4.5 months of his life, there was basically nothing I could do to keep him alive. What knowledge and experience does anyone have with a 25 week preemie? So. He lived in a plastic box. I watched as countless things were done to him. All in an effort to save his life. Doctors and nurses did things and I listened to what they had done after they did them.
He left the hospital with the feeding tube and a pump. I was instructed what to feed him and how much and how often. I was told which medicines to give him. I was told by three different therapists all the things that had to be done so he could eat, walk, be able to button his own pants some day. That intensity lasted two years. Things have slowed down, but they’re still there. They’re still everywhere.
He goes to therapists still. They know more than I do about him. About how bodies work and what he’s lacking.
He goes to doctors who sometimes say what a miracle he is and then offer nothing else to help him. He goes to doctors who want to try ALL THE THINGS to make him a whole person.
The control I speak about isn’t necessarily control. It might be more like ownership. To keep Cyrus alive and thriving, it has taken hundreds of people. He belongs to us all. And there is beauty in that. In the idea that it takes a village. It really does for him.
Since he’s been in my life, I’ve imagined apocalyptic, acts of nature scenarios. For years his tube feeds were made of Neocate, a powder that cost $600 a month (which insurance quit paying for…). If something happened, how long would he be able to survive with is electric feeding pump and expensive food? After that was pediasure. It’s made of sugar and other b.s., but it was recommended as a total nutrition replacement. It costs money, too. What if our city was blown apart? How much should I keep with me? His button used to fall out of his stomach. How many could be stock piled? What happened if it went out and the hole closed in a few hours (which kind of happened once or twice)? What happened if the one or two tubes were lost?
But Gaby came into my life and made her love smoothie for Cyrus. It’s organic and full of real ingredients. He’s gained so much weight. He looks better.
He still has a feeding tube, though. And a button attached to his stomach that could break at any moment. If we forget the tube on any outting, he doesn’t eat or drink. I mean. He can, but his body doesn’t seem to like it. He wouldn’t last too long without a button, tube, and some caloric smoothie.
The question I am asked most is, “Will he always have the tube?” My answer just a month ago was no. No of course not, it’ll come out some time. When he got the tube placed 6 years ago I was told it would be there maybe 6 months. And then every 6 months I was told 6 more months. It’s all just bullshit.
At the follow up appointment at the surgeon’s last week he said, “I’m sure he’ll have this button out in 6 months.”
“Don’t say that,” I said.
He so confident.
He has no clue. I bet his kids don’t have feeding tubes. I bet he’s never watched his kid retch and cough and apologize for being laid up in a hospital bed with a huge, fresh wound running down his stomach. I bet he’s never spent sleepless nights next to his kid while he woke up every hour violently pulling at the cords attached to him screaming, “I need a doctor!” I bet he’s never slept with his son’s feeding tube hooked up to a loud, beeping fucking pump, draped across his neck.
I bet there are so many other people out there going through worse things than this.
Maybe Cyrus will never be able to eat. Maybe it’s partly my fault for agreeing to the surgery so many years ago. Maybe he doesn’t really care as much as the rest of us.
The surgeon says that the surgery worked. That everything is fine. I went to the swallow study and saw for myself that food passes through the way it should. Of course, I’m not a radiologist, but I’ve learned a few things from having Cyrus in my life.
An email from the school nurse today said he puked his yogurt and cheese at lunch. Right now, it seems that nothing is the right thing to eat. Here he sits with his esophagus gurgling, his body rejecting everything, and all he does is apologize, once again, for all the things in his life he cannot control.
Here I sit, too.