Tuesday, November 15, 2011

Epic. Fail.


Henry had Physical Therapy this morning with his amazing and incredibly experienced therapist Linda. When I described the scenario below to her, she stated that Henry was probably experiencing episodes of sleep apnea when attempting to lay down and sleep in the back brace. She noted that he works hard to breathe in the brace (as it changes his formerly "normal" breathing posture) and he might not be able to keep up such effort at night, especially when lying down and especially when he goes into deeper sleep and his breathing slows. So no brace tonight (or at naptime). We will be going to our pediatric orthopedic doctor tomorrow and will explain what happened and Linda's opinion. She recommends wearing the back brace all day and then letting him nap and sleep at night without it. 

I am thankful that I have so many people helping us to learn what our little guy needs.

And I have been reminded not to ignore my "mommy instinct" when something does not seem quite right.


Henry's bedtime Monday night started off a bit scattered...

I thought he was not ready to go to bed yet at 8:15pm (he had a loooonnnggg afternoon nap) but he was hungry so I filled up the Haberman feeder and was feeding him on the couch while watching "Gold Rush" with Paul when I noticed his eyes were closing and he was getting a bit cranky...

so I decided to put him up to bed.

His back brace was already on. He had a clean diaper. He had comfy warm jammies.

I laid him down and he finished his bottle and I got him situated on his side with a flat pillow (we have lots of those in our house) under his head to keep his neck aligned with the brace..

I snuggled him a bit and made sure he was asleep and then I left to finish cleaning up the kitchen...

10 minutes later the screaming began.

I ran upstairs and could NOT get him settled down.

We rocked. We walked. We bounced. We laid. We tried a paci (which he promptly threw on the floor) and more bottle (he batted it away).

He started doing this "gurgling" sound in his throat I noticed for the first time in the hospital a few weeks ago.

I think it is his "I am uncomfortable and I am ticked-off about it" noise.

So last night between about 8:45 pm and 11:30 pm went something like this:

Henry screams and gurgles and gasps and almost vomits and thrashes and sweats - 45 minutes.
Henry falls into exhausted sleep - 5 minutes.
Henry wakes in a panic and scream and gurgles and gasps (etc.) - 45 minutes
Henry falls into exhausted sleep - 5 minutes.
Henry wakes screaming and gurgling and gasping (etc.) - 45 minutes
Henry (and mom) fall into exhausted sleep. - 5 minutes
Henry wakes up screaming..................................................

and then I gave up.

The velcro straps were pulled off and the back brace was dropped over the bedrail and Henry was settled back on the flat pillow...

and Henry was asleep in a minute and a half.

We will try again tonight...

or maybe today at naptime....

I will decide after I have my coffee.


  1. Aww, poor buddy. Baby steps, friend, baby steps...Feel better and know we are thinking of you and your precious boy.

  2. Oh man. That sounds bad. I'll pray for a better night...it has to get better, right?

    Love the graphic though.

  3. HUGE HUGS for you today, mama. =(

  4. Aww, poor little guy. Man, he really hates that thing, huh? I would too. Praying it gets better :)

  5. Oh Carla I am so sorry:( Poor, sweet, Henry (and momma!). Hang in there. Praying that y'all get some much needed rest today and tonight.

  6. That's tough. He's really tugging on your heart strings! I hope he adapts to the brace soon. Is he doing better at all with day time wear?

  7. Poor little bubba! Praying things get better FAST!

  8. Oh my gosh! That sounds TERRIBLE!!! TERRIBLE! I'm glad to read this with the update available. I'd be freaking out for you! I'm glad you are listening to your mommy instinct and have wise advice available. Hope the orthopedic doctor agrees!!!

  9. Oh praise God! You were soooo right not to ignore your instincts that something bigger was wrong. Thank God for a good therapist and the Holy Spirit!

  10. Fell in love w/ your precious little Henry after I stumbled on your blog and read over your family's love for him-bringing him home.

    I showed my adopted 2 yr old little boy some of your pix of him, and the most recent where he he is struggling and sad w/ his new brace and difficulty breathing. We remember Henry and all your family in our nighttime prayers.