Wednesday, June 10, 2015

A (miserable) day full of improvements!

Although Shea had a pretty rotten day, it was in fact full of good progress.  We are still on the PICU as I write this wednesday night.

Shea's pain is still quite significant at times, but we are learning how to manage it better and use some strategies to help him relax a little.  He is finding times where he's feeling well enough to watch part of a movie, or talk a bit, or play a for a few minutes quietly.  ( I think today was a "four 1/2 smile rating" )

He is having trouble sitting up straight because the room "spins and spins and spins".  He tolerates 45 degrees ok... but vertical is pretty awful for him right now, causing him to cry and become very anxious.  I'm thinking maybe inner ear from the 12 hours face down and then another day and a half of bed rest... hoping that will start to clear up tomorrow.

The cause of the breathing problems ( and maybe the fever ) was confirmed to be atelectasis. ( small scattered patches of collapsed lung tissue )  It is one of the most common side effects of long surgeries.  He had just been under for too long and required too much IV fluid to keep his blood pressure up... It sort of flooded his system.

This has shown improvement today, they decreased his iv hydration that he's still having, and because the back brace came today he was able to spend some portions of the day at 45 degree angles, or upright with support.

His sats are doing pretty well without oxygen today if we keep him relaxed.  

The good news about the brace is that it's here, so we can not be on such strict bedrest and this is helping his medical status start to progress.  The bad news is that after using it for a day we're realizing there are quite a few size and fit tweaks that need to be made so that it's not causing pain in his ribs and pressure points that make it hard for him to take deep breaths and stay comfortable. Hopefully orthotics will be here in the first half of the day tomorrow to help make these changes in the lab.  We are cheating a bit and letting him just use the back half of the brace and monitoring his movements closely.

The fever.... is still there, but low grade on tylenol... so prayers that by tomorrow that takes a hike as well.

Foley is we're back to intermittent straight cathing.  Drain tube is out as well!  We are also down to one IV instead of  2.

We've started the transition to decrease morphine, and oral pain meds have been started.  He was also upgraded off of liquid diet.

Lastly, he still has motion in his hips and knees which was a huge prayer, however they are very very weak.  I'm not too worried about this now - i'm sure it's a combination of the bedrest, the pain, surgical inflammation around the cord,  etc etc... but sure would love prayers that it is a temporary surgical side effect and atrophy, and that his nerve roots and lower cord are intact.

That about all for now, our goals for tomorrow involve getting the brace adjusted so he can tolerate more movement, working on the dizziness when upright, trying to get off the morphine, and getting off of IV fluids, and !poo!...  all 5 would be super duper.... but you know... gotta be flexible.

Many thanks for all the notes of encouragement and prayers.

PS I spoke with danielle on the phone today because i'm missing her.  She was happy as a clam at respite and really couldn't spare me too much time because she was too busy being social with her friends! 


  1. Thanks for all the updates, Liz. I just checked my blog reader now, so I'll start praying. Love this boy!

    Oh, and I ordered Dan's book too! I have only read Shea's chapter so far. :-) Love it! I still remember Shea's jabbering in Russian. Even when we went back for Grace 3 years later, every time I heard a little one jabbering in Russian, I was reminded of Shea and brought a smile to my face. I'm so glad he is home with you guys, I shudder to think what his life would be like right now if you hadn't adopted him...


  2. My heart is aching for this little guy! Such a special DUDE! Prayers several times a day as I think of him and you and your family. HUGS HUGS HUGS! I used to tell my son, Ben, that hugs were magic and if he didn't believe me, just look at his grandpa's face when he would hug him......Ben still loves to hug at the age of 26! So give him some of those magic hugs from us,,,, gently of course !
    Kathy and Charlie Denosky