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Wednesday, September 3, 2014

Sleep Apnea Worries and Woes - Henry Wellness Update

The doc said it's the most severe case of sleep apnea he's ever seen.

This is Henry's pediatric ENT, Dr. Chang, at Lucille Packard Children's Hospital at Stanford. And he was talking about the results of Henry's most recent sleep study, which was done in early August.

We knew his apnea had worsened gradually over the year. But we were not expecting it to be the worst case the doctor had ever seen. Severity of sleep apnea is rated on something called the AHI: Apnea-Hypopnea Index. The AHI is basically an average of how many times per hour of sleep the patient's blood oxygen level drops below the normal level. An AHI of 0-4 is normal. 5-14 is mild sleep apnea. 15-30 is moderate, and anything above 30 is severe.

In January, Henry's first sleep study measured an AHI of 15. Seems like kind of a lot for a baby, but they said it wasn't severe enough to merit treatment. Ok. Fine. This more recent sleep study revealed an AHI of 153.

Yes, you read that right. 153. One hundred fifty-three incidences per hour that Henry's blood oxygen level drops below normal because of difficulty breathing. 153. Again, we knew it was bad, but we had no idea it was that bad.

So what's to be done? Deep breath.

Dr. Chang wants to do a sleep endoscopy. This means that Henry will be put under general anesthesia and the doc will use a scope to look down his throat. Dr. Chang will be looking to see if/how Henry's "anatomical structures" - voice box, tonsils, glands, etc. in and around his airway - are collapsing during sleep and blocking his airway. The theory (to the best of my understanding) is that because of Henry's hypotonia (low muscle tone), the tissues and organs around his airway could be collapsing in while he is asleep and blocking his airway.

To an extent, this is fixable. Some structures can be removed - tonsils, adenoid, and some tissue around the voice box - if necessary to help clear his airway. So when Dr. Chang looks in with the scope, if he sees anything that is fixable, he will "fix it" (remove it) right then and there during the same procedure. It will all be done through Henry's mouth (intraorally).

Best case scenario: Dr. Chang finds something fixable, removes some tissue, Henry recovers well and his sleep apnea improves.

Less than best scenario: Dr. Chang doesn't see anything that can be fixed, or he does, but it doesn't improve the apnea. At that point, we would probably be looking at a CPAP, which I am certain will be a huge pain to deal with for a baby. I mean, come on.

Salt in the wound: The next available time slot in Dr. Chang's surgery schedule is on October 31. Halloween! And nothing available after that until the end of November! Halloween is almost two months away and that already seems like a long time to wait when Henry's sleep apnea is so severe. We can't in good conscience wait any longer. So as much as it breaks my heart to ruin Halloween (you know how I love holidays!), we've just gotta do it.

I feel like it's bad news, worse news, and a slim chance of improvement. And, as if it isn't traumatic enough to have Henry on LPCH's surgery schedule, we've got pre-op for Calvin this afternoon to schedule his remaining hernia repair surgery! Both my babies are having procedures done this Fall and I just hate it. I wish they didn't need it. I'm scared for them. I know the procedures are safe, and we have great doctors, but I'm scared. And maybe a little angry.

Any parents reading this who have been there? I'd love words of encouragement and advice, especially if you've had a kid with sleep apnea.


  1. Oh Diana, such an anxious time for you. Hannah had apnea for quite some time, post op, following her cleft surgery and I used to lie awake anxiously listening to her breathing pattern. I'm so sorry I can't give you any worthwhile advice. Fingers crossed Dr Chang can help. Anne xoxo

  2. I know it's not the same but Luke had to have surgery to open a blocked tear duct at nine months old with anesthesia and everything. It's not something you ever want to deal with as a parent but you can take comfort in knowing you are doing what is best for them. We will be praying for you guys. Love you.

  3. Love you, love the boys. Praying for Henry. Thanks for writing, even though it's tough. I want to say like a long string of expletives, but it wouldn't help. I rock back and forth between bewildered, depressed, angry, frustrated, and hopeful. I'm stunned, as we all are, at the numbers and the enormity of the problem. He's so sweet and such a joy and I just love him so much. Makes my piddly-assed problems seem a lot smaller. Wish I could help. Love you, love the boys. Praying for Henry.

  4. Oh, Henry! I agree, Henry's such a sweetie, and shouldn't have to go through this. But I'm so glad he's got attentive, loving parents who are advocating for him. Good job noticing the changes in his sleep, requesting another sleep study and getting him the help he needs. We'd be up for a early or second halloween to make up for the surgery scheduling. Sending lots of love.

  5. Thanks everyone. It means a lot to know people are thinking of us and praying for Henry. He's just as happy and cheerful as ever. He brightens my heart even when it's heavy with worry.