Saturday, August 28, 2010

Hitchin' a ride...

Hitchin' a ride
gotta get me home
to my baby's side
Ride, ride, ride
Hitchin' a Ride
-Vanity Fare, Hitchin' a Ride

Sorry for the lack of updates lately - it's been a busy couple of days. After a small step sideways with some breathing trouble, Jay is now making big leaps forward again. Yesterday afternoon he switched back from the CPAP to the high-flow nasal cannula and seems to be tolerating it very well. He's still got junky lungs and an icky-sounding cough, and his chest x-rays still look pretty yucky. He's still got a fever, so the infectious disease folks are more and more certain that he's got pneumonia rather than an infection from one of his central lines. While pneumonia certainly isn't good, it's far better than a central line infection - it's likely treatable with oral antibiotics rather than the six week IV infusion that was promised. (Is that one complication that we have sidestepped?!) Still no official word, but things are looking better than we thought initially.

Jay is also getting more and more food. He has had a variety of pureed fruits, oatmeal, and even some hummus for lunch. Between the food smoothies and the formula through his feeding tube, they have turned off his IV nutrition. He is also off all heart support drugs--still on amioderone for the arrhythmia (again it's going to be a while for that one). Almost all of his meds have been switched to oral meds, and they are hoping to take out his PICC line tomorrow.

But for the song lyric connection, Jay got to leave our humble CICU room for a wagon ride today. In the same way that our first outings when we brought him home as a newborn required loads of stuff, this journey was quite a production. His much-adored AJ hauled the portable oxygen tank, the nurse pulled the IV pole with his 6 remaining pumps (down from a high of more than 15!), his daddy pulled the wagon, while Granna and Popper took pics like the paparazzi. Quite a scene they made! But they took 2 laps around the whole CICU, and even headed out to the bridge where they could look out the windows. Jay seemed quite happy to see something other than those same 4 walls.

Jay is quickly regaining his construction abilities. This morning he sat up on his own for 20-30 minutes playing with his tools. Sitting up and balancing is a big step on its own. He is also slowly regaining his hand-eye coordination and arm strength.

Talking is still a lot of work for him, but he is improving each day. He will mouth words and give a faint whisper, but he won't really vocalize anything. Two weeks with a breathing tube will make the ol' throat a bit sore. Vocal cord paralysis is a potential problem, and one he experienced with his first heart surgery as an infant. It usually resolves on its own, but we hope this is just a sore throat not something more serious.

We're guessing that he's still a week or more from the step-down unit, but he's been making such great (and FAST!) progress over the past 2 days, he could surprise us again. It's been a great couple of days.


Libby Barnes said...

Fantastic report! Loved the pictures. Looks like progress has really been achieved in the last couple of days. Imagine him being able to ride in a wagon - really incredible to those of us at home "watching" with great interest. Thanks for such great news.

Mindy Marshall said...

Yahoo! So happy to read this latest report. Thanks for the pictures - it's GREAT to see Jay playing with his tools. Praying for continued healing.

Anonymous said...

This report makes my heart feel good. Keep up the good work Jay. Still keeping you in my prayers.

Nancy Kiltie

Anonymous said...

I'm so thankful that Jay seems to be doing so well and making such big strides towards wellness. I know that must feel good to him -- and you.

Please tell him we can't wait to see him back at FBC in Sunday School and now this year in Mission Friends! What fun we'll have!

Lynn and Scott

Anonymous said...

What a beautiful sight! Thanks for the wonderful update. You've been busy, but with good things. Know you remain very much in our thoughts and prayers.

Mary Alice

Beth said...

I love medical terms like "junky" and "icky-sounding" - they are tremendously descriptive, but not nearly as informative (and heart-lifting!) as the photos.

ILYTVB - Gabby

Anonymous said...

How wonderful to see Jay riding in the wagon!!!!!! He is such a brave little boy!!!! Lots of prayers continue will continue for all of you!! Thanks for the great pictures!!!! Lots of love.

Anonymous said...

Great news! And we love seeing the pictures! We will pray that things continue on this road to healing. Love, the Underwoods :)

Archie Gupton said...

Great Work Jay Tool Boy! I am so glad to hear you are back to work....playing with wonderful tool toys! The wagon is exciting, so let the grand folks click away. Keep smiling big Guy!

Anonymous said...

I am glad for the busy couples of days and the leaps of progress forward. I kept telling myself, "no news is good news", and yet again, that old saying proved right. It is so great to see Jay sitting up and playing with his tools, and enjoying a wagon ride. As he gets over the pneumonia, he will start gaining more strength, so our prayer is that he will get over that quickly and to be able to talk soon. Praying for all of you.

Aunt Ali

Anonymous said...

Jen and Derek,

It brings such joy to see Jay in the little red wagon! He has come so far. We all love him.

Dee & Bob

Anonymous said...

Told'ya Jay's roller coaster was just building steam to reach the next peak! :-)
Thanks for sharing the view with the rest of us; the pictures of Jay awake & playing are a wonderful sight!


Ann Lawrance said...

These pictures and words do my heart good.
Love you all,

ANAPatterson said...

i thought for sure we would be seeing the lyrics to TUBTHUMPING coming up...
We'll be singing
When we're winning
We'll be singing
I get knocked down
But I get up again
You're never going to keep me down

Jay is a fighter. I was so excited to see him playing and inthe wagon out for a ride.
Hugz little man to you and your mom and dad.

The Pattersons