Tuesday, May 14, 2013

Tuesday update - May 14th

Nick and I are both feeling a bit disheartened today.  We are getting restless to see Theo better and at home. He is such a happy kid almost all of the time in the hospital, but is now facing some new hurdles before he can get moved out of the PICU and then discharged.  The good news is that he seems to be past a lot of the major complications, and Dubya is still doing fabulously well.  Now, though, he needs to be able to tolerate his medications and feedings by g-tube.

For those of you who know Theo, you know that he's always had a problem with throwing up.  We hoped that would go away after transplant, but so far there have been no signs of it abating.  So today, after several throw up incidents yesterday and overnight, the doctors decided to stop feeding him through his g-tube (into his stomach) and went back to providing nutrition solely through his veins.  Even with just medication in his g-tube this evening, he threw up.  The GI (gastrointestinal) team is involved at this point, and there is some discussion about doing another operation to convert Theo's g-tube to a GJ tube, which would allow food to be deposited directly into a section of his small intestine, thereby bypassing the stomach.  But any solution will likely take time.

Theo also spiked another 103 degree fever tonight.  He's had fevers off and on for about a week.  It's not clear what is causing the fevers; it could be withdrawal (from all the sedation medications, which he is being treated for), infection (which we certainly hope it is not) or something else like low hemoglobin.  (He does have low hemoglobin, so required another blood transfusion today.)  I know the whole team is frustrated by the persistent fevers.

It's hard to see Theo stuck in a crib for what has now been 3 weeks.  We're getting restless to see him healed and bring him home, and it just doesn't feel like there is an end in sight right now.  I know that I am ridiculous for being discouraged given the AMAZING, miraculous progress we've seen over the last week, and the fact that we know that our God is good. So I'm trying to pray Joshua 1:9 tonight:
"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go."

One highlight of the day was getting a call from my 87 year old grandpa saying that he was in Charlotte tonight, and wanted to know if he could see us.  (Charlotte is one of the stops on his Harley ride from Las Vegas to Richmond.  Yes, you read that correctly.  He road his Harley around the 4 corners of the United States last year, and he road cross-country and back the year before, so this year he wanted to ride through the rest of the 48 contiguous states that he missed on the two prior trips.)  When he arrived at the hospital, he immediately made Theo smile.  He's got a way with grandkids and great grandkids.  He and Theo gave each other knucks, both with big smiles on their faces, and Theo was showered with kisses. They are certainly two handsome dudes.

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