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.

Wednesday, November 9, 2011

Our newest challenge....

is getting our little Henry a little happier about THIS....

He is wearing his new back brace.

It will do 3 things -

1) Keep his spine from bending too much more than the already 110 degree curvature.

2) Help to strengthen his back and shoulder and core muscles.

3) Puts his chest cavity in a better position for breathing more normally.

But it is uncomfortable....it is supposed to be to do its job...he will have 2 big areas of red marks on his back where the skin will need to "toughen up" to tolerate this brace....

which he needs to wear 23 hours a day.


no momma likes to see her baby in so much discomfort...

even when it is GOOD for them....

and especially when baby has already spent the first year of his life enduring hospitalizations, malnutrition and life in an orphanage.

I can only handle one day at a time.

One hour at a time.

We receive the grace we need WHEN we need it, not in anticipation of down the road or what might be or even what is definitely coming....

so Lord I ask for the grace Henry and I both need in this very moment....

and in an hour and tonight and tomorrow and next week and next month....

I'll ask again.

Tuesday, November 1, 2011

A slight change in plans....

Remember my last post, giving a preview our upcoming week of October 24-28??

If not, here is a refresher:

Monday - casting for back brace for Henry's scoliosis
Tuesday - physical therapy evaluation (doc wants Henry to have therapy 2-3 times a week)
Wednesday - Early Childhood Intervention evaluation for services through the county
Thursday - Cervical Spine X-Rays and Blood Tests at the Children's Hospital
Friday - mommy and baby stay home and collapse!

Well, there was a slight change in plans that explains my blogging absence. See below:

Monday - same as above
Tuesday - same as above
Wednesday - same as above
Thursday - same as above
Friday - Henry cannot breathe and mommy calls 911 at 8am and mommy and Henry ride in ambulance to hospital where they cannot get his breathing problems under control so mommy and Henry ride in another ambulance to Children's Memorial Hospital in Downtown Chicago where Henry starts running a temperature in the Pediatric Intensive Care Unit and inbutation is threatened but he gets a bit better in the evening but has another really bad night so we cancel Henry's big baptism and party planned for Saturday afternoon and instead my uncle, Fr. Fanelli, comes out to the PICU with daddy and siblings Sabrina (12, godmother) and Luke (17, godfather) for a grace-filled private Baptism on Saturday afternoon and hope we get to go home Sunday but Henry has another yucky night and needs to get deep suctioned several times so we stay at hospital on Sunday as well (but move out of PICU) and daddy brings youngest 3 to visit mommy in hospital (Henry in isolation due to croup virus) so we go to McDonalds together and play in the family playroom on the 5th floor of the hospital and then mommy stays overnight again on a horrific recliner chair in the new room where Henry FINALLY has a better night so we get discharged and daddy comes to pick us up about 1pm and we get home in time to get the little ones ready for trick-or-treat.

Here is the rundown in pictures...

So now you know ;-)

Happy Feast of All Saints everyone!!!