Sleep Behavior Clinic Appointment

Our sleep journey has been years as everyone knows. Apnea has *not* been the driving factor the past two years. Our ENT retired last fall and we were handed to a new ENT whom I really like - plus she pushed up higher up on the Behavioral Sleep Clinic list - !

We had to keep a chart of Hannah’s sleep for two weeks leading into the call: 

Thankfully it was a telehealth video - saves us so much time and effort. 

They literally asked us questions for 50 minutes - even after a 3-page questionnaire. They convened off camera and came back with their plan. We’ll be trying these strategies gradually:

1. Stop sitting in her room, even for a short time. We currently sit in her room and have cut back - I do better at leaving BEFORE she falls asleep because she needs to fall asleep on her own. As soon as I leave, she comes out 2-3 times, sometimes asks for the bathroom, sometimes asks for Dad. 

2. Start utilizing a “Bedtime Pass.” Hannah will start with two passes - she can use two "passes" that Tim and I will acknowledge with emotion. Anything after that, she’s escorted back with a neutral parent (no emotion). **I’m not sure how this will work - we’ve tried incentives and Hannah isn’t driven by incentives - she’s driven by the attention of Mom and Dad. So we’ll see how this goes.

3. Physical Barrier; a decorated gate or ribbon that is a visual cue to stay in your room.

4. Weighted Blanket

5. Sleep Fairy book (a specific book recommended by CCHMC that has helped some)

6. No more in Mom & Dad’s bed in the 4am hour! **I logically knew we’d have to do this. I wanted to hear it from a professional and have to prepare myself to lose an extra hour of sleep for this step. I really hope it does the job because I can’t wake up every morning at 4:30am because my kid won’t go back to her bed. 

And for what it’s worth - they acknowledged we’ve done a lot of good thus far to make her sleep independently - we just need to push across the finish line. 

Will probably start this weekend - wish us luck! 

Great Hannah Health News!

 Hannah had her ... 5th (?) sleep study last Friday evening. It was Tim’s turn up to bat. I was glad - after the first week of remote learning, donating blood that morning and just having a general heavy workload, I was able to have one-on-one time with Nora. 

We actually ate at a local Thai restaurant - we went right at 5pm and sat on the patio - the only customers! 

Hannah did fairly well and slept enough to get a good reading. 

The results came back already this week - Hannah’s apnea episodes went from 3 an hour down to 1! That’s huge - and without any changes in behaviors, surgeries, etc from last sleep study! 

We won’t go over the specifics until mid-October, but we can breathe easy. 

Now to try and focus on why she still gets up once a night... whether it’s behavior or what. We wordlessly walk her back every night and walk straight back out. 

I have added ferritin labs to her annual blood work. Low ferritin can cause sleep issues. 

So for now - good news!

A Sleep Update

So after the sleep study success, Hannah was still waking up and coming into our room, on average, two times a night. No bueno.

I frantically did some research on what else we could do... namely supplements. I don’t want to venture into melatonin because it messes with hormones. I found one or two other options, but no physician has dosage recommendations since supplements are’t recognized by traditional MDs. Fine. Some other suggestions were to get Hannah’s ferritin levels checked (iron) - her hemoglobin was in normal range at her last labwork, so that’s not it either. 

Looks like it was time to buckle down again and do hard work: behavioral training. 

I started about a week ago. When Hannah was close to falling asleep, I kissed her on the head and walked out. She freaked out, cried and opened the door. I said nothing and put her back in her bed, kissed her head and walked out silently. This repeated about four more times. It sucked, I felt bad, but I had to rip the bandage off. 

Eventually she whimpered and wiggled herself to sleep. Tim did this the following night, with less door openings and crying. 

It’s been one week. She may come in once around midnight, but we put her back in and she goes back to sleep and so do we. A handful of times she’ll wake in the 5am hour, but then goes back to sleep again. 

Last night she slept from 7:30pm - 6:15am! That’s a long time for Hannah. Even if she gets up once, Tim and I aren’t spending any time in her room, and that’s a big win in and of itself. 

Tim and I already feel so much better and Hannah must too! 

We’re doing it!!

A rare moment - Hannah asleep ON me for nap time.

Hannah - Medical Updates!

So. Sleep Study was March 15th. Hannah did great - she slept well which helps for good data reading. 

We had our follow up late March and the ENT was barely in the door when she said Hannah’s episodes went from 6 and hour down to 3 episodes an hour - she crossed the threshold to “mild” apnea and we can manage it with Flonase - !! The Supraglottplasty was a success! I felt a huge weight lifted from my shoulders. Avoiding a CPAP means everything!

However - Hannah is still waking at night and coming in our room. At least twice a night. I’m not sure which angle to attack from now. Behavior training? Diet (some swear by no dairy)? Supplements (I read glycine can aid in better sleep)? I do want to avoid melatonin since that messes with hormones and sleep/wake cycles.

So – good Hannah’s apnea is under control, but we’re still not sleeping. Ack. 

We also had Hannah’s annual echo and EKG this week. She was super cooperative with our distractions for the echo. Hannah’s heart is in the same shape as last year which is good! See you in one year, Dr. Hanke! 

Supraglottoplasty

Supraglottoplasty: the removal of excess tissue in the airway.

The continuing journey of Hannah’s unexpected 2018 diagnosis...

Hannah had her surgery the Tuesday after MLK Day. It took about one hour. We met her in the ICU afterwards; she was sleeping with just some monitors on, an O2 cannula, and an IV port that was not attached to any IVs thank goodness. Dr. Shott felt optimistic about the surgery.

She was pretty peaceful and then I made the mistake of putting lip ointment on. I didn’t think it’d wake her up, but it did and she was a bear. Whoops. After some crying, she fell back asleep. I felt terrible. 

The afternoon was Hannah going in and out of sleep while some crying in between. We got some movies on and she settled a bit. She was drinking water fairly quickly afterwards... way better than the tonsillectomy. 

Tim spent the night with Hannah since I’d done the T&A overnight as well as the titration study nightmare. 

He of course did not get any sleep - how can you when nurses are in and out all night and useless monitors are going off? Argh! 

Hannah was eating by dinnertime and they were discharged super fast - out by 8am Wednesday morning! She was back at the sitter on Thursday. 

No, Hannah’s sleeping has not changed. But we will not know the “official” outcome until her next sleep study on March 15th. I still think her waking and coming into our room is behavioral or age. I’d rather try to manage that than have an unsuccessful surgery. 😕

Upper Airway (Apnea) Appointment:

We kicked off 2019 with an 8:15am follow-up to the hellish CPAP calibration. 

We weren’t seen until about 9am for our appointment. Sadly common for this department. Dr. Shott is actually the best of the best unfortunately, especially for kids with Ds. 

After viewing Hannah’s scope and seeing her poor toleration of the CPAP, Dr. Shott agreed we can move forward with the supraglottoplasty. 

The main reason for apnea is Hannah’s small mouth housing a regular-sized tongue. But the scope clearly shows excess tissue on the vestibular folds (is what I believe they showed us). The supraglottoplasty will remove excess tissue and hopefully alleviate some of this closure while sleeping. The procedure is 50/50 that it will ease the apnea. Hannah is measuring at 6 episodes an hour which is considered “moderate” apnea. 5 episodes is considered “mild” apnea. 

Tim and I are willing to do this procedure versus fighting a long battle with CPAP. It’s way easier than the T&A. One night inpatient and healed in about three days - versus 11-14 days with the T&A. 

Procedure is Jan 22nd (already!), follow up sleep study mid-March, follow-up to the sleep study is mid-May - ! That’s how in-demand and sought-after this department is. 

Wish us luck! 

The Titration (CPAP) Study

Spoiler Alert: It. Was. Awful. 

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First problem: I didn’t realize a titration study (calibration of a CPAP) actually involves having to wear the mask. Damn. No one ever gave us a practice mask, so that already set us up for a bad night. 

The first battle was even getting Hannah to wear the headpiece. That was a fight in and of itself. Fighting and thrashing. Myself and the technician decided to wait until she fell asleep. 

This photo is FALSE ADVERTISING.

Getting the mask on was a struggle, but Hannah would somewhat tolerate it and doze off. Then I would wait until she was solidly asleep and try to attach the air hose. The longest she went was 10:30-11:30pm. Then she woke up gasping and thrashing, ripping it off her head. These attempts and gut-wrenching wakings happened until 3:30am when I exhaustively told the technician to stop. I was done. My child was in distress and now I’m afraid she’ll never take to this device. 

We slept from 3:30-6am. 

We got to the car a bit before 7am and my car was covered in ice and I couldn’t locate an ice scraper in my car. I nearly cried. Turned the car on and sat with the heat full blast for a good 10 minutes. 

I gave Hannah a bath to get some glue out of her hair. I sent her off to the babysitter so I could nap. It was good to have the afternoon to myself. Nap, run, coffee & shopping. I needed that afternoon alone.

I’m fully convinced this CPAP is not going to work. We were told if Hannah didn’t tolerate CPAP, we’d move to surgery - which still isn’t guaranteed to solve her sleep apnea. 

Additionally, I’m concerned about the costs. Our insurance only covers 50% AFTER the deductible is met. 👎Sigh. And we’re not even sure she’s going to wear it. I want to tear my hair out.

Hannah: Sleep Apnea Status

We had Hannah’s endoscopy and MRI back on October 26th. There was nothing groundbreaking; her diagnosis is: 

1. An enlarged tongue (well duh, that’s most kids with Ds - or a smaller mouth)
2. A floppy epiglottis; the flap of cartilage at the root of the tongue, which is depressed during swallowing to cover the opening of the windpipe. This flops closed while she sleeps which causes her to stop breathing (low muscle tone strikes again). 

So the next steps are: 

1. A CPAP titration study (sleep study used to calibrate continuous positive airway pressure (CPAP) therapy.)

2. If Hannah cannot tolerate the CPAP, we will move to a supraglottoplasty; a surgical procedure to remove obstructive tissue from the airway. It sounds crazy, but lots of kids we know have had it and has helped them. 

Dr. Shott said this procedure is only 40-50% effective to get children completely off the CPAP. We asked for surgery first but were told no. 

Tangential, the bad habits feel like they’ve grown. We’ve gotten out of laying down in her bed, moved to the chair, and are now sitting by the door - the “camping out” method. We have yet to make the jump to leaving her room while she’s sleepy. She stands at the door and screams and sometimes falls asleep AT the doorway. Ergh. 

So all this work feels pointless because a CPAP is headed our way and we’ll have to lay in bed with her so she can (maybe) get comfortable with this hose hooked up to her face. 

And those of you who know Hannah can certainly paint a picture of how she’ll tolerate this thing on her face - are you kidding me?! Maybe she’ll surprise us. She handles sleep studies fairly well. 

Anyway, I’m headed to Children’s tomorrow night for our titration study. Zzzzz.