Friday, October 1, 2010

Up and down and back again.

Owen has severe sleep apnea. No surprise there. Thankfully, three months ago, in my sleep deprived state, with the support of my sleep deprived husband and in the company of my sleep deprived eldest son, I requested that this recent sleep study be performed. Because, I kept saying to all of the specialists, "NO ONE IS SLEEPING!" 

What is surprising is that Owen had ninety (90) sleep apnea episodes in a four hour period. He was roused from stage 2 and stage 3 sleep ninety times. He never entered REM sleep, the restorative sleep that we all need to grow, learn, heal.

The data they were able to collect was both fascinating and the most helpful of any, from any specialist, to-date. Owen has a very distinct neurological response to these apneic episodes. If you look at his EEG absent of the sleep study data, you see bursts of "multifocal" activity which, taken out of context, are highly irregular. But when the sleep study data is laid down on top of the EEG tracings, as the sleep specialist pointed out, you can see where Owen's sleep apnea initiates (appears just prior to) these irregular EEG patterns. His brain is very angry about the fact that it's being ripped out of sleep for the ninetieth time. 

We also learned from the sleep study readings that his oxygen saturation is excellent (except when he's not breathing due to an apneic episode, of course) his CO2 exchange is normal and his lung/chest exertion is rhythmic, strong and in concert with the work that his abdomen is doing.

One good thing about being in the "severe" category for anything (although I really think it should be referred to as "exceptional") is that you get priority loading. Owen will be seeing an Ear, Nose and Throat specialist at Children's very soon to discuss a tonsil and adenoids removal to open up his airway. This works much of the time to open up the airway enough to resolve the apneic episodes. The scar tissue from the removal also helps to strengthen the tone of the airway, making it less floppy and prone to collapsing during sleep.

So another inpatient stay. A surgery. Seattle Children's. But not for a few weeks. Elliot and I are leaving in a week and a half for a week-long, much-needed, play date with my sister in D.C.

And word from the orthopedic surgeon. No growing rods. 

I've lost more sleep over this issue than any other, I think. If I have slept, nightmares.

Kelsey and I were both shocked. Elated. It's not even the case that Dr. S. said that it was optional and that we chose the chicken path. Dr. S. said it's not necessary. He said he won't do it. He's not concerned right now. He was direct. Knowlegable. He had talked to our pediatrician. To the neurodevelopmental pediatrician. He knew we were coming.

He showed us the final read of the spinal films. He measured and compared. What matters, they've discovered (the spine guys), is the flexibility of the curve, the degree of curve during the traction film. Owen's is thirty-five degrees at the point of the greatest curve. They start to become concerned at fifty. He indicated that Owen's curve has not actually increased much at all in two years. This is good, the spine guy said, since the spine grows most intensively from birth to age three (and again in the pre-teen years). It's all arms and legs for awhile. 

Organs. Fine. Lungs. Fine. Neither are much at risk right now, especially the organs which are flexible and can shift and float around. One kiddo, curve much greater, older, had a kidney removed which increased significantly, his lung capacity (crazy what you learn...). Lungs are compromised with much greater degrees curves and, especially, more rigid curves. He was pleased with Owen's flexibility - in his spine, hips and legs. 

Oh... the hip. Dr. S., also a hip guy, said the hip is not only far from dislocated, but that it's pretty well seated still and not causing any pain. This meshes with the read from two others (Owen's chiropractor who provides cranial-sacral therapy and his feldenkrais practitioner, who is also a physical therapist).

Speaking of... Resuming regular cranial-sacral sessions has almost eliminated Owen's acute pain episodes. Too much "sacral-sitting" in a poorly fitted car seat (a common problem, I guess, according to Owen's new physical therapist at the Harrison Pediatric Rehab Clinic in Silverdale). Pinching of nerves between L5 and the sacrum. Tight illopsoas and hamstrings. These things discovered by touch. Trained hands. Owen's chiroprator and cranial-sacral provider. Thank you, Mari.

My "musts" for Owen. Cranial-sacral. Feldenkrais. Massage. And his new physical therapist is fabulous.

And, yes. The new office in Bellevue is indeed, quite fancy. Lovely, really. But it's good to be heading back home. Again.

~ S


Katy said...

I just danced around the room with happiness. SO GLAD that you did not have to make a decision about the very scary growing rods. They were mentioned to us at our first meeting with the orthopedist (Charlie has a slight curve) and I thought, "oh holy hell).

I'm also really please to hear that you guys got some concrete answers about Owen and the apnea. I read a whole book about the brain and sleep is critial to thinking. Just imagine how much better you will all feel if you manage to end these episodes.

Charlie had adenoids out a while back and it was painful, but only for about 48 hours.

Ginger said...

Stacy, this is all such wonderful news! I am so happy for you all.

karen gerstenberger said...

This news is a great gift - thank you for sharing it! I'm thirlled for all of you, especially for Owen. Now, you can take your trip with a much lighter heart! Blessings and traveling mercies to you.

Stacy said...

Thank you, lovely ladies, for these comments... Katy, thank you for adding your personal experience/thoughts. I might be checking in with you again soon about any tips on the tonsil and adenoids surgery (O may also only have his adenoids out - just depends on what they say at the ENT consult).

Sarah said...

Have fun in DC. I loved living there.

Shannon said...

Such wonderful news!!! HOORAY AND YAY AND YIPPPEEE! What a relief. How long will you guys be at Children's for the tonsils and adenoid surgery?

Have a great trip!!!

MizzMarr said...

Wahoo for good news!! We're doing a little dance for you all. xoxo