Monday, May 27, 2013

Monday update - May 27th

Theo rolls in style
Discharge is still tentatively scheduled for tomorrow.  Theo will likely get another round of dialysis (after having the day off today), and if labs look ok and we are able to get the equipment and medications we need, we'll have our family under one roof tomorrow night.

Honestly, I am feeling really sad tonight.  I'm disappointed that, after five weeks in the hospital, we are bringing Theo home without a functioning kidney and in worse shape than when he left.  When I told my dad that, he reminded me that we're bringing Theo home with so much potential.  We're going to continue to pray for that potential to be realized.

We enjoyed our Memorial Day at the hospital by getting doctor's orders to go outside again today.  Nick, Theo and I enjoyed a picnic on a quiet, grassy area under a tree near the hospital.  It's so nice to spend time together away from machines and all kinds of interruptions.

In a lot of ways, we are going to be bringing home a very different kid than we left with five weeks ago.  We're starting back at square one on the developmental front.  As you can imagine, Theo has lost a lot of strength and conditioning after being in a crib so long.  Currently, he can't hold his head up on his own for long, and he is no where near being able to sit up on his own.  Thanks to his oversized belly (he looks like Gus from Cinderella, we've decided), he can't tolerate being on his stomach, so it will probably be a long while until he is crawling again.  (I went to Target tonight to buy some 2T shirts that should fit over his belly.  The 12-18 months shirts we own don't stand a chance.)
Gus Gus!

In addition to his developmental setbacks, he's still dealing with withdrawal from all of the sedation over the last month.  Many times throughout the day his eyes are glossed over and he looks drugged.  It will take 3-4 weeks of weaning him at home before he is drug-free.  He's also sleeping non-stop.  Yesterday he probably slept for 20 hours; today was a bit less, which probably can be attributed to the fact that he was off dialysis and we had him out for several hours.

Smiles have been hard to come by lately.  It's clear that Theo is not feeling his best, and I can't blame him.

Memorial Day picnic, per Doctor's orders
We are hopeful that getting Theo home will give him a huge jump start in recovering, but I know that we are in the very early stages of the process.  I know that the most monumental thing that could happen right now is for Dubya, his transplanted kidney, to wake up.  Until then, we'll be making daily trips back to the hospital for dialysis.

We're amazed at how brave and tough Theo is.  We never imagined he would have to go through so much.  Thank you all for loving him, for loving us, and for sharing in this last month with us.  We continue to trust that God is good, and know that he is an awesome God with a plan much better than our own.


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  2. Just reading some backblasts (if you will)...and I must say that, all things considered, it is clear that being home with his driven and passionate parents has left Theo feeling motivated, determined, and above all happy! The F3 and FiA nations have you in our thoughts and prayers...and we look forward to EACH Theo post. Keep the developments coming, Theo. We hope to see you with a Ruck Pack soon! :-)