10.07.2013

Post Fontan :: Day 5 :: A Turning Point??

Sorry, y'all.  I know some of you are wondering where in the world your Derrick update is.  We had a busy day and I totally forgot I needed to post something until I looked at Facebook and had lots of reminders.  :)  Thanks so much for caring about our boy.  I really do appreciate that!!

So we spent our first night on the floor.  Best. Sleep. Ever.  Even if it was in clusters of about 3 hours at a time in a closet-sized room, it was fantastic!  We alternated sleeping in the bed with him and sleeping on the couch.  Lovely being out of ICU!


Today was the first day Derrick felt like opening some of his gifts.  My mom had sent him a big bag of individually wrapped gifts and he had us open all of those over the past few days.  He wanted to watch, but didn't want to do it himself. Today Mamaw, Papaw, and Jenny Kate came to visit and they brought him this 3D light.  After playing with it he was all about opening presents. 


He got lots of fun things from his friend Sarah,

and some cool motorcycles and a balloon from his friend Trace.  :)  There wasn't a whole lot of time between these pictures, but the one above this was a pretty accurate representation of the first half of the day.  The bottom one was in a good enough moment to get a fake smile out of him.

Today was big.  Derrick got up out of his bed and stood on the scale, walked to the bathroom (with assistance of course) and went to the Atrium!  He's been asking to go to the Atrium since about 20 minutes after coming off the ventilator the day of surgery.  There's this super cool mountain that cars will jump off of that he loves.  Today he wasn't exactly interested.


Jenny Kate had a blast and has asked all day if she could go back.  It is a pretty awesome playroom if I do say so myself.  I see a lot of time spent in the Atrium in our near future. 

Since the cars didn't excite him, D decided he wanted to paint. 

They gave him a board to paint on so he didn't have to get out of his wagon.  It is unbelievable how accommodating and helpful the Child Life specialists are.  They didn't bat an eye at the enormous amount of stuff we had to bring in there.  I know they do it all the time, but it was amazing.  It was quite a bit of work to get in there, but the lady that was helping us made it so easy.  All of these poles and gear are second nature to her, which made it much less stressful for us.

We only spent about 10 minutes there today.  Since it was the first day D had gotten up and then out, I think it was just too much on his body and too much stimulation.  He had this pitiful face the whole time.

Once we got settled back in the room they gave us some awesome news....we got to move again!  To a room twice the size of the one we were in!  Y'all, we got the penthouse suite of 8D.  It's huge, has a double set of doors so it's really quiet, and has a view of the Atrium.  After spending a few hours in here I'm not so panicked about spending at least another week here.  The tiny room we were in had me in a panic!

Justin's mom left and his dad and Jenny Kate stayed here.  The plan is to see how JK does in this setting.  We miss her like crazy and she misses us too.  His dad is staying until Tuesday, so we have until then to see how she acts.  The two of them went back to the house we were staying at and will be back to spend the day with us tomorrow.  The hope is that she'll do fine (especially in the bigger room) here during the day and one of us will take her back to the house at night.  We have no idea how long we'll be here and it makes us sad to have our family seperated.

Justin, JK and I went out to get some dinner and get clothes from the house.  Gosh it's nice to get fresh air!  It's almost like you forget what life is like when you're in a hospital.  It was a beautiful day and one of my favorite things about Charleston is this bridge.  It's beautiful.  Especially when you watch it go by through the sunroof and the clouds are perfect. It makes me happy.


Once we got back our sad-faced little man was a wee bit better.  He asked to play his beloved Kindle for the first time.

And we got a smile that wasn't quite as fake. 

He invited me to come watch VeggieTales with him, which was a big step!  He hasn't been initiating conversation or activities until tonight and it made us SO happy!  Maybe we're getting our boy back?
I think this one was actually genuine.  :)

He played with his new magnetic mosaic toy tonight with Justin.  He passed out about half way through, but he wanted to play even if it was mostly just watching...or pretending to watch.  :)


Late last night we got the bummer news that D's drainage was positive for chyle.  For those of you who have no idea what that means, during surgery his thoracic duct was injured.  The thoracic duct carries lymph and chyle, which are emptied into the bloodstream and go to nourish the body. When the thoracic duct is injured, chyle (a fluid that contains fat) drains out into the chest cavity.  If this condition, called a chylothorax, isn't treated it can be really bad.  The treatment is easy though...a fat free diet while the thoracic duct heals.  It happened last time so we knew the likelihood of it happening again was high.  The problem is the thoracic duct likes to hide under the scar tissue, so when they go in for any additional surgeries after that first one the possibility is great that it will be nicked because it can't be seen under the scar tissue.  It took them more than 2 hours to cut through Derrick's scar tissue, so it really doesn't surprise us a bit.  

So while this is a setback, it is manageable.  His heart is doing great, so we can deal with this!  A chylothorax also causes extra drainage, and since D had "moderate plus" drainage before he was eating, after he ate two whole chicken nuggets last night the drainage really picked up.  His drainage has been quite high today, but some of that is also because he got out of bed.  We're hoping since we've cut the fat out today that the drainage will start slowing down significantly.

On a happy note, he's getting that middle chest tube out tomorrow!  It's draining a lot less and is ready to come out.  Woo hoo!  He has three right now, and the two on the sides are about to fill up this little pleur-evac (the box that holds the chest tube drainage), but that middle one isn't doing a whole lot so we're pulling it.  

He only has one line in now, which is for fluids and albumin.  The fluids are so he doesn't get dehydrated since he isn't taking in as much fluid as he needs to, and the albumin is to replace proteins lost through the chest drainage.  We're hoping we can get him drinking enough to only have to be hooked up to the iv pole for albumin soon.  

I think that's about it for today.  I'm sorry I'm so late updating.  I'll try to do better tomorrow!  

Specific Prayers Requests:
  • That Derrick doesn't fight this fat free diet and that we're able to feed him in a semi-healthy way.  It kills me that we have to basically feed him processed garbage (other than fruits and veggies) because in reality most things good for you have some fat in them.  He won't sustain life on fruits and veggies, especially with no butter, I can promise you that.
  • That this drainage slows down soon so we aren't stuck here with him hooked up to tubes for too terribly long.
  • That his personality continues to return and he's interested in interacting and playing again.  
  • That his pain stays under control and his horrible skin issues resolve soon.  They're a little better today but still quite painful.
  • That Jenny Kate can handle being here with us so we don't have to be away from her so much.  And if it's not going to work out with her here that we know by Tuesday so she can go home with the grands and we don't have to be totally stressed out about it.  
Thank you, friends, for loving and caring about our boy.  I love that he has so many people praying and rooting for him!!

If any of you know any good fat free recipes or ideas, please do tell!! :)

Oh, and thank you for the advice and/or shared experiences about the medicine taking battles.  We tried several of the things you told us about today and sometimes they worked!  We like to know about what has worked for the "older" ones....this is totally new territory for us!  Thanks!!

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