More Tests, Tortures, And Another Diagnosis

We tortured the Monkey with the CPAP machine for two weeks. We let him play with the mask, the hose, we had it turned on all the time, so he got used to the noise. He was fine with it. Until you put it on him.

It was like reliving the sleep studies. He’s cry and wail until sinking into an exhausted sleep. For 45 minutes. And then he’d wake up, panicked, and completely stuffed up. So I’d stay up with him all night, rotating between the bathroom, where I’d steam up the shower (Oh the water bills …) to help clear his nose, and the chair, where he’s fall asleep on my shoulder, breathing through his mouth and soaking my shirt with his drool.

I called the doctors who had given us the CPAP machine for advice and bought a tube of ointment — essentially — that was supposed to help. No deal. He just couldn’t breathe with it. It stuffed him up too much. So they brought us back in for another appointment. This time we got a different supervising doctor, who I liked. He had three kids. He was great with the Monkey, who didn’t even raise his voice the entire visit.

The verdict? The CPAP thing is UNPROVEN in children younger than 5. But it was “worth a shot.”

But what about all the surgery supervisor No. 1 had claimed was essential? Supervisor No. 2 ROLLED HIS EYES. He rolled his eyes and muttered “I can’t BELIEVE he said that,” while he took a look up the Monkey’s nose.

This doctor’s diagnosis: The Monkey will probably outgrow this stuff. He’s got small nasal passages, which don’t help him. But keep breastfeeding him and keep him in our room until he’s a year old. He’d like to see the Monkey at 1 year, just to check in on him.

That’s it.

I’ve never been so relieved in my life. I happily handed the CPAP machine over and called the Hubbs from the parking lot. The Monkey and I did a little “No more torture device” happy dance.

Four days later, his nose cleared up.
________________________

That doesn’t mean the whole ordeal was over though. McDreamy agreed that the CPAP was unproven. But because his sleep study numbers were so bad, we needed to do more tests. Specifically, a CT scan and laryngoscopy.

The CT scan was done “sleep deprived”. The good thing about this was no drugs to make him sleepy. The bad thing was having to keep him awake through 2 naps so he would sleep. Even worse was that the hospital kept having emergency patients come in. So instead of being able to walk in at 1:30 p.m. (our appointment time) and have the scan done, I had to keep the Monkey awake until 3 p.m.

He was not happy. I was not happy. I kept going up to the nurses and reminding them “hello? sleep-deprived infant? How much longer?” One of them finally came over and said to just let him sleep, since they didn’t know how much longer it would be. I leaned against a wall, pressed a kiss into his forehead, and laid the Monkey’s head against my chest. He was out within 30 seconds. I sent the Hubbs to the cafeteria for food, since he was bonking and getting crabby. (My boys get that way, low blood sugar = crankiness.)

Fifteen minutes later, a technician came out and called the Monkey’s name. He turned the lights off in the scanning room and had me lay the Monkey down while he strapped him in. I left the room and less than five minutes later he came out with a blinking Monkey. Once back in my arms, he went back to sleep.

Back at McDreamy’s office, we were called into the back room where he was viewing the X-rays of the Monkey’s skull.

“I never in a million years would have guessed that he has this,” he started. “But you see how the bones of his nose curve inward here? They should be curving OUTWARD. Its called pyriform aperture stenosis. It explains why his nose is so easily stuffed up.” (Photo from radiology.rsna.org/content/221/2/392.full.pdf)

So looking at the photo below, the big arrows are the curve he’s talking about. That’s bone that is obstructing the nasal passages, which are illustrated by the small arrows.

But that wasn’t all. In a small number of cases, this condition can cause one big top front tooth (instead of two) and what that indicates is that there’s an issue with the frontal lobe of the brain. (Oh yes.) Now the CT scan revealed that the Monkey had two front teeth (whew) but to be thorough and extra sure there wasn’t anything wrong with the brain, McDreamy wanted to do an MRI, during which the monkey would be unconscious.

Furthermore, if the Monkey’s breathing didn’t improve, McDreamy mentioned MAYBE having to do surgery to bore holes in the curved area of the bones (the larger arrows). ______________________________________

We hadn’t even done the laryngoscopy yet. It felt like a real surgery. In some ways it was: The Monkey was sedated, and McDreamy used a probe with a camera on the end to look down his throat at his larynx. We even got the pictures when he was done.

Since it was treated as a surgery, we had to be at the hospital early in the morning to be checked in. The Monkey got to wear the infant version of a hospital gown (fleece!). The hardest part was handing him to the nurse to take in the back to be sedated. (They’d give him some kind of breathed-in treatment to knock him out.) Watching them walk away from us was very hard. The Hubbs and I spent a nerve-wrecking 45 minutes in the cafeteria until the procedure was over.

The outcome: The laryngomalacia was state dependent, meaning it was the worst when the Monkey was asleep. It was especially floppy and blocked his entire windpipe when closed. For now, we were still in the wait-and-see mode, but it helped explain why the Monkey’s sleep study numbers were so bad.

In the post-op room, we had to wait for the Monkey to wake up. When he did, he was disorientated, he was hoarse. And although the Hubbs was standing right next to him, he freaked out until I picked him up. The Hubbs had to help me dress him while he tried to crawl under my shirt again. He wrapped his little arms around my neck while we walked out of the hospital and held my hand the entire ride home. Then he slept the day away. The next morning, he was fine. But clingy, of course.

________________________

At the MRI, it was again treated like a surgery. The monkey would be fully knocked out by the medication. He again wore the fleece infant hospital gown. He flirted outrageously with his admitting nurse, until she stroked his cheek, told him he was SUCH a good boy and that she was going to give him a present before he went home. He just grinned at her. (She gave him a blanket.)

The hardest part of the entire thing was handing him over to the technician, again. Except this time, he didn’t want to go. (The technician wasn’t a cute girl either, it was a burly dude.) He clung to me, grabbing fistfulls of my shirt. I kissed the top of his head, told him I loved him, and that I’d be there when he woke up. I handed him to the technician, and the Hubbs kissed the Monkey’s cheek.

As the technician walked away, the Monkey lunged for us and held his arms out. He started to cry as the technician took him through a doorway and out of sight. The Hubbs hugged me and we settled into the waiting room.

We counted our blessings in that waiting room. We saw child after child wheeled in and out of the MRI area, their heads bare from chemotherapy treatments. Their limbs thin and gaunt. They cried out for their parents. The Hubbs and I looked at each other and he hugged me.

Thank goodness its not that.

The MRI came out clean. No brain issues. We were in the clear. (cue big sigh)_______________________

So McDreamy decided the way to check on the Monkey’s breathing issues was to do periodic sleep studies — 4 a year, to be exact.

By now, McDreamy’s hospital had reopened its sleep study center, so we went there one Monday night and slept over. For those who are counting, this is sleep study No. 3 for the Monkey. And you know what?

WE FINALLY GOT GOOD NEWS.

There were no instances of sleep apnea. He never stopped breathing. In fact, his study was only off “normal” by 0.14%, which McDreamy attributes to the laryngomalacia. And then he said no more sleep studies were needed.

In fact, we were ALMOST in the clear until he noticed that the Monkey’s weight had slipped one tier down on his growth curve. Normally, this wouldn’t be a concern, but the Monkey’s issues can be the cause of eating problems/not gaining enough weight. So we were given a month to “fatten him up.” (Being that I’ve spent most of my life trying to do the opposite, this was fairly amusing.)

Our next appointment is Wednesday, so I’ll let you know how he does!
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