Post Fontan :: Day 8 :: Forward Step & A Grump

This pretty much sums up our day.

Derrick got his mediastinal (middle) chest tube removed today! :)  Woo hoo!!  That's about the extent of any medical news we have for today.  It's a huge celebration and we're so super happy we're moving forward!  His Albumin (iv protein replacement) has been decreased to twice a day from four times a day.  That means that drainage is getting lower!  

Derrick was in a whiny, grouchy, no good mood pretty much the entire day today.  There may have been about 5 minutes of happiness from him and that's about it.  We're blaming the Versed and tube removal for the grouches today.  Let's hope tomorrow is much better!!

We had visitors today!  Susan and Renee came to hang out and brought the kids lots of goodies.  We had a fun visit and are so thankful they spent their day with us.  :)

We also got some fun treats from Shannon and Amy.  The first things I noticed in the bag were the Fall Little Debbie cakes.  You know, the Christmas Trees, but the fall ones.  Justin and I were both excited over those.  It's the little things, you know.  We'll have to sneak away for a treat when D isn't looking.  :)  These glasses were also in the bag.  We had fun with those.  D wouldn't let me take a picture of him with them on, but JK would.  She's a little ham these days.

While my family napped I had a visit from another heart mom.  We'd never met before but she stopped by to give me some ideas about the fat free diet.  Her daughter had to be fat free for a year.  Yes, a YEAR!  Ugh, I can't even imagine!  She brought Derrick some fat free goodies that he has enjoyed snacking on this afternoon.  She actually wrote a book about surgery that was recently published called Emerson Learns About Surgery.  I haven't read it yet but I'm going to order it.  I know it will come in handy at some point!

Derrick didn't want to go to the Atrium today, but we made him anyway.  Jenny Kate loves it and he needed to get out of this room.  We all did.  JK knows the drill.  She signed herself in today. :)

The only thing Derrick would do was color a wooden airplane.  He and Justin made some paper airplanes last night and they took those in the Atrium to fly, so he did semi-participate in that, but that was the extent of it.  I'm really hoping tomorrow is a better day for him!  I know he's been through a lot, and I'm sure today was hard on him, but it's hard not to be disappointed about him being so glum when we've had several good days with the old D back.  I know it will be better tomorrow. 

This is day 8.  After the BT Shunt (1st surgery) and the Bi-directional Glenn (2nd surgery) we were discharged on day 8.  Come on drainage, we're ready to GO HOME!

Prayer requests for today:
  • That Derrick feels more like himself tomorrow.
  • That the drainage continues to decrease.
  • That we get a little more creative with this fat free diet.  D is getting bored with it, not to mention he's thrown up the last two fat free hot dogs he's eaten.  We're running out of options here and I need to cook for this boy!  
  • That D doesn't lose anymore weight.  He's down from 27.6 to a little over 24 lbs.  That's a pretty big weight loss and he doesn't have it to lose!  
  • That JK continues to do well with us here.  She did great today and seems to be dealing with it fine.  We really hope she continues to be comfortable and manageable here. 
  • That my shoulder feels better.  I don't know if it's stress or the awkward sleeping I've been doing (or both) but my shoulder is not happy right now and kept me awake a LOT last night.  
And speaking of last night, this is how my girl fell asleep...
Right on top of me.  I loved snuggling with her last night!

Thank you, friends!!  


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