Post Fontan :: Day 7 :: The Difference a Week Makes

Wow, what a difference a week makes!  Exactly one week ago, this was our man.

And today...

Unreal, right?  Looking at this boy and what he's gone through in his life, I cannot imagine how there are people who don't believe there's a God.  Blows my mind.  I am so, SO thankful we're at this point!

I woke up this morning to this view. :)

This morning we decided to give Derrick a bath. Of course he can't have a real bath, but we cleaned him up up pretty good.  They have these awesome hair caps that you heat in the microwave for a few seconds then put them on your head. When you start scrubbing around your hair gets wet, shampooed and conditioned. I thought they were pretty awesome! I may need a few of those to go home with. D acted like he hated it.

But gosh he felt better when he was finally clean again.

The boys had to get their Mohawks back! We didn't use the normal glue in Derrick's hair because its way to hard to get out when you can't actually shower.  Instead he got his spikes from KY Jelly. Who would've thought!? Apparently the nurses use it on the babies a lot. It worked for D!

We played Yahatzee this morning. If you've never played Yahatzee Jr (we have Toy Story 3 edition) you really should. It's our favorite game!

We were visited several times today by the gift shop delivery girls.  Derrick's friend Parker sent him this mondo Mickey.  

JK absolutely loves him!  Thanks Parker and fam!  :)

He also got cool surprises from the Browns,

And his heart buddy Ivan.  Thank you both!! Y'all sure know how to bring a smile to this boy's face! (Although this isn't good proof of that.) 

Derrick has gotten so many awesome goodies and I know I haven't thanked you all, especially those he got in icu, but thank you so much! He has not been bored and has loved having new things to do. Thank you!!

We took another trip to the Atrium after Jen got here.

She loved playing with the babies,

And fixing dinner for everyone.

The first and only place D went was the air hockey table.  He has a new hobby for sure!

Nona and Poppie came for a visit today.

JK and Poppie attempted a puzzle. I don't think it lasted very long. :)

While Nona, Poppie, and Papaw were there Justin and I headed out to the grocery store.  We had to get some fat free food for our boy.  The hospital has options but not enough. I have a few ideas of some things I'll cook when we get home, but for now we're kind of stuck. I haven't bought this much boxed food in a long time. He's doing ok going fat free, but he had a few moments today where he got really upset when he couldn't have certain things. It's hard to explain to a four year old that all of a sudden he can no longer have the foods we' e been pushing down his throat for so long. It's temporary, though.  Totally doable.

Tonight was the first time D has invited JK into his bed.  It made us so happy when he asked if she wanted to come up to watch Magic Schoolbus! They enjoyed the show with fat free Pringles dipped in fat free ranch. Yum!

As I was loading the pictures here so I could post later, this was my view:
It makes me so happy for us to all be together. I went back and forth all night last night with myself over whether or not we should keep JK with us after Justin's dad left today.  My head told me she should go home, but my heart couldn't do it.  We miss her and she misses us.  Tonight I brought her back to the house we've graciously been given to use. We left Justin and D at the hospital.  I felt terrible leaving them there, but one of us leaving is the only way for JK to be with us.  Gosh this decision had me so worked up. I felt like I had to choose between my children and I couldn't stand it. We have friends coming tomorrow, Thursday, Friday, and Saturday. If jk can't handle being here then we have a way to get her home. I just really hope she does well!

As far as Derrick's medical stuff, we're just waiting. His chest tune output was slightly too high to pull the middle tube today, and those two side tubes are draining like crazy.  We were told again today that "maybe tomorrow" would be the day for the middle one.  We'll see.  Either way we're not going home tomorrow so it isn't a huge deal.  He seems to he tolerating them fine and has even learned where to hold them to help us get him moved around.  He's had some back pain, which we were told was very common.  It's a referred pain from everything going on up front.  When he complains about his back hurting he makes a pretty big deal about it so it must be pretty intense.  Other than that he looks great! His sats are usually between 89-92 which is awesome! Hopefully they'll go up to somewhere close to 95 once his fenestration is closed.  That's almost "normal"!  If that happens his muscles won't have a clue what to do with all of that oxygen. :)

Someone pointed out the other day about how much our prayer request list has dwindled. It's awesome that our prayers are being answered.  It's so cool to be able to look at the specific requests and literally see how they've been answered. We are so thankful!

Anyway, we're praying for Derricks drainage to decrease. 

For us to remain patient as we wait.

For jk to do well being with us at the hospital and that her anxiety about having to leave goes away.  She doesn't trust a single person who walks in the room and won't let me out of her sight.

A week out from a major open heart surgery and that's about it. It's all about the drainage now.  Our boy is doing fabulously. Thank you for praying for him!!

PS I'm not proof reading this. I did it on my phone and its way too much work. Overlook anything please, especially those random autocorrected words that I'm sure are hiding in here somewhere. ;)

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