Sunday, June 27, 2010

Taking his sweet time

Hi Yall,

Joseph is doing well, progressing slowly but steadily.  Apparently he must've been reading Aesop, cuz he's going "slow and steady to win the race."  At least, that's how is it right now.  We've stopped pretending to guess about tomorrow.

Last week he was showing off, breathing over the ventilator and keeping all his vital signs strong.  They decided to extubate (remove the breathing tube).  Unfortunately he changed his mind right after that and started struggling a lot.  When his blood gasses started showing some trouble they reintubated.  He of course immediately improved. Stubborn little guy. 

They strongly suspect it had a lot to do with drug withdrawal. See, to manage pain and sedation the little guy has been on heavy narcotics for half his life!  (I knew 50 year olds who could say that, but a 3 week old???)  They weaned him very fast from the narcotics and gave him a medication (methadone) to ease that transition, but between the 2 meds in his system he ended up a little sleepy.  They held a dose to help him wake up and when they took the breathing tube out the withdrawal symptoms caught up with him.  Despite all the tubes and wires and fluid, THIS was the worst and hardest thing I have seen so far. My heart broke for the little guy, but they gave him some more meds, balanced him out, and he calmed down.  Plus, he had breathing help again.

He's right back to breathing over the ventilator, opening his eyes, grabbing hands, following voices with his eyes.  He watches the flashing lights on the IV pump and wakes up every time Daddy talks.  This time, however, they are taking things a little slower.  He's on the medication to help withdrawal symptoms, plus some extra Lasix to squeeze out extra fluid off his lungs.  (the vent pushes air in by pressure which promotes a build-up of fluid in the lungs, which makes breathing harder.  It's the biggest obstacle to removing the vent.)   *maybe* he will be ready Tues to try again?

So far everything heart-related looks much better - just like we all had hoped!  If he continues to do well there won't be any other heart surgery for a few months.   Pat started a blog about all things Joey, for any who are interested in keeping up with the updates.

Keep those prayers coming - they are such a source of strength for all of us!

God Bless,
Pat, Kate and family

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