Post Fontan :: Day 12 :: Not Today :(

Derrick's favorite thing these past few weeks is to throw his hands up, cock his head over to the side with a really goofy look on his face and say, "Not today!" no matter what it is we're talking about.  He did it today for the first time since surgery.  Today that was totally appropriate.  

Not today!

And tomorrow is already out too.  He's already drained too much in this 24 hour period to pull the tubes, so now our hope is Tuesday.  Womp womp.

Bummed?  Absolutely!  To say we're ready to go home is an understatement!  However, when we were in the Atrium today it was all put in perspective.  I love the Atrium.  It's such a neat place.  Today there were more kids in there than usual and I couldn't help but notice the different equipment they drag around and wonder why they're there.  It's kind of overwhelming at times seeing kids in hospital gowns with iv poles and bandages and no hair...and they're playing like regular old kids.  

Today we made a comment about hoping to leave tomorrow and the dad of a little boy sitting at the art table asked how long we'd been here.  We told him, then I asked him how long they had been here.  "Since July."  Ugh!  I asked him a few more questions and found out that his son is having a bone marrow transplant in November and they probably won't be home before the first of next year.  Mom and dad take turns being at the hospital, working, and being at home an hour away, while 10 month old sister is back and forth between whoever isn't at the hospital and grandma.  

You don't have to look far to find someone who has it worse.

Our little friend next door is here waiting for a new heart.  She's had 3 heart surgeries and now has to have a transplant.  She is the most chatty, sweetest, smiliest little thing as she wheels her oxygen tank around behind her.  We've exchanged movies and she and Justin played air hockey together.  She and her mom have to make this 2 hour trip every couple of months for labs and check ups.  She misses her friends at school and her family, and she told me, "I'm not really the playin' type.  It's hard for me to breathe and stuff.  But I love pickles!"  She told me lots of medical info and used terms that I was surprised to hear come out of a 4th grader's mouth.  She shouldn't be talking about bronchioscopes and lab work.  She's nine! 

You don't have to look far to find someone who has it worse. 

So tonight instead of dwelling on the fact that I know we're not getting out of here tomorrow either, I'm just going to be thankful that we're close.  That we're only waiting on drainage, not anything that's gone wrong with his heart.  I'm thankful this journey has been as "easy" as it has, and that we have our boy and get to see his smiles everyday.  And I hope I can remember not to be blinded by what I want, and what I'm ready for, and can keep open eyes and an open heart for all of these people around us who really do have it rough.  

As usual, one of the highlights of the day was the Atrium.  I'm honestly going to miss being in this playroom when we leave here.  I missed having someone to play babies and "kitchen" with today, but I did get to play pool with D.  I use the term "play pool" loosely.  I am certainly no pool player!  Thankfully Derrick doesn't want to play it the right way anyway.  He likes to sit in a chair at a corner pocket and block balls. 

He also enjoyed painting a fire truck and an airplane today.  His works of art are going to take days to dry because the paint is to thick but he loves it!

Have I ever told y'all how awesome and supportive our family is?  My brother and his crew came down again for another visit.  Visitors really break up the day and make go by much faster.   The real highlight of the day was seeing them.  We just hung out in the room and chatted, but it was fun to hear about life outside in the "real world."  You kind of forget that life is still going on out there when you're stuck in here!

Derrick and Zac enjoyed playing games on the Kindle.  It was fun to see him laugh and be silly.  So normal.  :)
Thank you for praying for him.  And for us.  Your continued love and support has carried us through a whole lot.  Please continue to pray that this drainage stops.  And if you have an extra minute, please say a little prayer for all of these kids and their families who are stuck here for far worse reasons than we are.  I'm sure they'd appreciate it too.



1 comment:

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