Wednesday, February 20, 2008

Lancelot's larynx

As if we needed a reminder of how unusual life has become, the moment came last night. A nurse spent an hour measuring Hope's head, marked it with red dots from a wax pencil, affixed a dozen electrodes and leads and finished with the piece de resistance -- wrapping her entire head and neck in a gauze mask to keep the wires from crossing.

It was tough to watch. Her little head was covered in wires. The gauze left her face exposed but covered her head and neck. My mind raced: This is freaking wrong, you shouldn't be 3 1/2 months and have a head full of electrodes to measure brain activity. She looked pathetic, but I couldn't decide if she looked more like a Depression-era football player or an onion.

Mo settled the debate.

"Hello my little Lancelot. Have you found your place at the Round Table?"

That was the one moment of levity in an otherwise long night during Hope's long-awaited sleep study. We don't get the results for a week, but we doubt they'll be good.

The study, which kept her in a surreally spooky clinic overnight, used electrodes, belts and other gizmos to measure the quality of Hope's sleep, especially her breathing and apnea. Those are the brief interludes when she stops breathing, catches herself and thinks "Hey! I'm not breathing!"

The fear is Hope's acid reflux is causing a blockage in her throat. Or perhaps her floppy airway, or laryngomalacia, closes during deep sleeps and suspends her breathing. Either way, we need to figure it out. Surgery is in her near future for ear tubes to help her hear, and her apnea could be cured by a surgical tweak during the same operation.

The study was about a mile from Beaumont Hospital in a non-descript office building that appeared otherwise vacant. It was all so strange. We got there about 7:30 p.m., had wait for 10 minutes to be buzzed in, then were led into a basement. We were ushered into a room that sort of looked like a hotel, except one with a camera that moved when you did and a loudspeaker from which unseen nurses and a neurologist could bark commands.

Big Brother was watching.

The study videotaped eight hours of sleeping, as well as brain activity, breaths through Hope's nose and the elevation of her chest and stomach as she inhaled and exhaled. A doctor will evaluate the results and make recommendations.

They might not be pretty. Hospital rules only allowed one parent in the room through the night. I stuck around 90 minutes, then hightailed it home. The ladies returned about 6:30 a.m. It was an especially bad night. Hope woke up about six times, was given supplemental oxygen through her nose because she wasn't breathing well and threw up all her milk about 4 a.m. Mo didn't get any sleep.

We're tempted to make excuses. The place was weird. The heating system was loud. How would you sleep if you were covered in wires and belts and videotaped? It was just one night. Swell questions, we know. But they're not going to change the results.

We have a lot of fears about what's next. We worry the cure may involve more complicated surgery or supplemental oxygen at night. But the sight of Hope covered in a spaghetti-strand tangle of wires reminds us yet again that we're way past the point of fear. We need to buck up and do what's best for her.


Misty said...

I wish the very best for you and your little lancelot....mason will be going through a sleep study as well in the future.(hopefully sooner than later..there is a terrible wait here). he also has very tiny ear canals and so unless he gets a fever or seems to be in pain, we won't be able to tell if he has an infection for sure. we see the ENT next month and hope for tubes as he has significant hearing loss. we're thinking of little hope here in CO! our two little munchkins are going through so many similar things. mason has two more surgeries to go through in the next year (not including ear tubes) is scary, but as you've said, we need to swallow our fears and do what is best in the long run. lots of hugs from me and mason!!

Anonymous said...

Wow -- what a night! It was probably harder on Arthur and Guinevere than on Lancelot. Funny; I'd been thinking a lot about the apnea in the last few days.

I'm glad the test is over. Now there will at least be some sort of clear direction about one or two aspects of your varied and interconnected concerns.

Hang in there, loves. You do good work.

Grandma K.

Anne said...

Hope has her parents genes and is one tough cookie! It sounds like it was a surreal experience. I'm glad the test is over too and hopefully it will help give you some clarity for the decisions that lie ahead.

Love you all-
Aunt Annie

Karen said...

Sounds like you all had a rough night. Ben's never had a sleep study - it sounds like they're no fun. I hope you guys get useful information from the test.
Ben also has hearing loss and tiny ear canals. Our ENT says she can't put tubes into his eardrums even if she needed to because of the size of his ear canals. In any case Ben does not appear to have problems with middle-ear fluid, so he has worn hearing aids since he was 5 months old.
Best of luck with the upcoming surgery.

Brooklyn Salt said...


That sounds like slow torture. I'm sure that sweet little Hope's sleep pattern was influenced by the change of scenery. Personally, when I'm in a new place, I don't sleep so well.

I'm glad these tests are over and we, as always, are hoping and praying for the best.

Maybe now that Mo and Hope are home, they can both catch some much needed Zs.

Lisa said...

It's weird. When you tell people your baby's going to have a sleep study, it doesn't sound bad. But I will say it's one of the worst "tests" we've had to endure. Liz has had 3, and they've all been nightmares. I agree. How can you put 1,000 wires on a baby, and then tell them to sleep. Ugh!!
Hang in there guy!
Lisa, Brian and Liz