As Mindy and I were waiting for Mom and Dad to meet us at a restaurant, I saw a 10 (14?) year old boy walking in, holding his mom's hand. He walked stiffly, like a robot, like a person who wasn't in control of his muscles. He smiled the whole time and made a noise which I could only understand as contentment or slight anxiety. His head was titled to one side.
I looked at Mindy and said, "That won't be him."
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While I was visiting the Little Man yesterday, I looked at his nurse and said, "I'm 75% serious when I say this, 'give us the fucking syringe pump and send us home.'" She said she'd talk to the doctors about it.
You see, Cyrus is still in the hospital because he breathes too fast. He breathes too fast because he has reflux. He has reflux because he's a preemie. The reflux causes micro-aspiration. That causes him to breathe too fast. I hope you see the horrible cycle.
Mindy and I have noticed that the past few days he's started to become more agitated. All of the nurses have agreed that Cy-Guy is the coolest, most laid back baby of all time. Ever. But not recently. He gags, pukes, and squirms. He has even cried a few times. He never cries. It's obvious he's in pain. Imagine having heartburn all the time. Then puking. Then having more heartburn. He never gets a break.
So, he's got this tube that runs from his nose to his stomach; this keeps his reflux alive...his esophageal sphincter can't close completely...which causes more aspiration...which causes fast breathing...which causes him to not be able to eat...which causes him to need the tube that runs from his nose into his stomach...which exacerbates the reflux...which...
* * *
One option the nurse gave us, and today the doctor mentioned is a nissen and g-tube. As a relatively intelligent person, I realize this procedure is easy. But as Cyrus' mom, I remember the last time he was entubated and he seized and seized... Seizures can cause brain damage. And you know what brain damage means.
You're wondering why this seems like the best thing to do? Well, it would take that NG tube out, which would help his sphincter close, which would mean his reflux would get better, which would mean that he wouldn't aspirate on his food, which means his breathing would become regulated, which means he could learn how to love his bottle (without huffing and puffing while eating) and give his lungs time to grow and heal.
What Mindy and I wanted was to just bring him home on the NG tube. We could pump his food through it every 3 hours like the nurses do. We could do what they do...they agreed we could. But it seems that he'd still have the reflux and all the pain.
* * *
Like I said, we haven't had "the talk" with the doctors. It seems certain we will in the next few days, though. They'll say it's all "routine" and I'll try not to cry in front of them. That means I'll just cuss a little more when I'm asking questions.
If you've ever seen your preemie baby seize, raise your hand...It's horrible. And now I watch him gag and turn bright red. Then he frowns, like he's wondering why I'd do that to him. We'd rather him gag a thousand times than lose half a brain...than lose any part of his brain.
So it looks like we have another decision to make. And don't say, "that's just like a parent" or "now you know what it's like to be a new parent." Shut up. I'm at the stage now where I'll punch you. I will fucking punch you.
* * *
I've been through some traumatic things in my life: watching a black trash bag of puppies drown when I was 5 (that's another blog. you'll understand if you're from a small town), learning of my uncle's tragic car wreck when I was 6, watching my grandpa breathe his last breath when I was 17, coming out in a small town at the same age. And of course, all of the small things we all go through but can't remember.
They were always explained away with a small phrase, "because." When my Oklahoman friend and I told our fellow grad students that we'd drowned puppies their eyes were wide and mouths opened, "Why!?" they asked. "Because...it's what happens where we're from." When anyone died in my family, besides religion, the reason mom told me was "because things happen." When my parents questioned me about why I was gay, all I could say was, "because."
When my beautiful son asks why he was born so early, why he has so many scars on his stomach, why he wears glasses when most kids don't, why we wanted a baby in the first place, I'm afraid that old, tired expression is all I'll have to give him. That expression that's used to sedate children so they won't ask more, so they don't hurt more..."because."
Because things just happen.