Tuesday, May 28, 2013

Days 39 and 40, Post Op Fontan (May 26 and 27)

Back in early April when we were planning Eli's Fontan, I never dreamed my hospital updates would go to 40+ days.  We've been here longer than Noah was on the ark (some days it probably smells similar).  I think we try to just go day by day and that's a big reason why I haven't lost my mind (much) in here.  However, when I think about it, I can't believe we're still here.  It's frustrating at times, but we know Eli's not healthy enough to come home yet.  Even though he's not healthy enough, the things keeping him here are not super serious either.  We've said all along "he's breathing and he's beating, we can deal with the rest."  That's still true, but it's surprising to us the variety of problems we've encountered.  It's been interesting to say the least!

The night before Eli's diaphragm plication, we were in the play room.  There was a little girl playing with her mom and Eli had to check out what she was doing.  They "played" together (as well as a two year old and three year old can) and the mother and I started talking.  I found out the daughter was in the hospital overnight because she'd had a heart cath that day.  I couldn't help but get that excited feeling a heart mom gets when meeting another family who's been through it as well.  We're in no way excited that another family has watch their child go through such things, but the fact is that these families are out there and it's nice to meet up and share stories and support when we can.  I found out the little girl was going to have her Fontan in the next few weeks.  Excitedly I blurted out that Eli was in the hospital because he's had his Fontan.  Her next question was "When was it done?"  I've never in my life wanted so badly to lie to someone.  Why would I want to tell her that my son's surgery, the one she was preparing for with her young daughter, was five weeks ago, we hadn't been home yet, and he was about to make his third visit to the OR in less than twelve hours?  I truly debated telling her his Fontan was the previous Monday (as if he'd be out of PICU and playing in the play room in less than four days' time?), but I didn't.  I told her the truth.  I also told her of his complications and why he was still here.  She could see that he was doing well, but understood that he wasn't well enough to go home.  She was very gracious and even introduced me to a Facebook support page for heart parents.  I still feel bad and almost wish we hadn't met when we did.  But I am very glad we met!  Please keep her daughter "B" and their family in your prayers through June as she undergoes her Fontan. 

As far as Eli updates, there's not a lot to report yet.  His bowels are slowly starting to move along, but that's with a couple doses of Miralax and a suppository each day.  His belly is still distended but not nearly as big as it was Saturday.  His appetite is slowly improving and he's feeling better.  The JP drain is still draining fluid from his chest, but we are only on post op day 3 (for that surgery).  Yesterday it was 116cc and the previous day was 155 so we are trending in the right direction.  He hasn't had a chest x-ray since right after surgery, so I suspect they'll do one in the next day or two.  Eli still requires supplemental oxygen (1/2 liter), but again, we're only post op day 3.  Overall, he's feeling well, playing better, and starting to eat more. 

He did have a moment today to make Momma very proud.  Bryan was getting the tire on our fan fixed (it was completely flat & we found out it had a concrete nail in it....that would do it!).  While it was me & the boys in our room, one of the priests came by to check on us.  Father John has been around here since long before Eli was diagnosed, although this was the first time this admission that we've seen him (we've seen others).  He remembered Eli and exclaimed over how big he's gotten and asked questions about his health.  A Mickey Mouse cartoon was on and Eli had been sitting up in bed and Zachary was on a stool beside the bed watching it.  Father John wanted to pray, so he took Eli's hand and my hand while I held Zachary's with my other hand.  Right after he started the prayer, Eli says "Oop-day!" (whoops!).  He reached over to the DVD player and pushed pause before turning back to Father John.  Father John offered up a very nice, somewhat lengthy prayer specific to the needs of Eli and thanked Him for bringing him this far in such good health.  When the prayer was over Eli reached back over to the DVD player and pushed play.  Father stood and stared at him for a moment and then turned to me and said "That was no coincidence!  He knew what he was doing!"  Our nurse walked in right then and Father told her what Eli had done.  He stood there amazed for a few moments before saying he'd never seen a little one do that.  I think Eli remembers us pausing/muting the tv for family "night-night" prayers at home, but it makes me feel good that he hasn't forgotten.  And it's never been his job to mute the tv for prayer time so maybe it is now!  And by the way, after Father left, Eli threw three of his toys out of the bed and pulled Zachary's hair.  He's not a complete angel ;)

Bryan and Zachary had a good time at the Louisville Bats game.  They got to meet up with one of the pitchers, Chad Reineke.  He's a really nice guy Bryan has been following for a while and he's become aware of Eli's story.  He gave the guys an autographed hat to bring back to Eli and they got some pics with him at the game. 

Zachary with Chad Reineke
Zachary wanted to take a picture of Bryan with Chad Reineke.  Pretty good!
Eli with an autographed Memorial Day weekend Louisville Bats hat autographed by Chad Reineke
It was a fun weekend for us.  Eli got his Daddy & Bubba fix, I got to spend time with all my boys and some one on one time with Zachary.  Our dorm room now sports dragon pictures to go with the dinosaur pictures Zachary previously brought.  The four of us were together most the time and that's what's important.  Hopefully we'll have more (good!) news to update with this week.  Thanks for all the prayers and support!

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