Day 15: Macy's Journey with the Rex Shunt (Discharge Day!!!)

We broke out of the hospital today!!!!  I am so shocked that we are out!  Macy had a great night last night, and her oxygen level stayed at 95 and above all night!  Woohoo! 

First thing this morning, a few of the doctors came in and said that they thought she was ready to go home!  She wasn't hooked up to anything, getting any IV meds, on oxygen, or having any seeping from her wound anymore.  She's still on nebs every 4 hours and using her acapella, but it's nothing we can't do from home. 

One hour later, our nurse came in wearing an isolation gown.  Yep, we were put in isolation 1 hour later due to a lab result from one of Macy's cultures they ran on Saturday.  It was from her urine culture.  They placed us in isolation while they talked with the Infectious Disease doctors.  Nope folks, I can't make this stuff up!  My mom and I kept looking at each other in disbelief!  So we spent about 3 hours in isolation before they came back and said that due to such a small amount detected, they think that it was just contamination of the clean catch of urine.  Therefore, they aren't going to treat her or do anything about it.  Dr. Superina then came in, and said to let us go!!!  However, he said that we could only go back to the Ronald McDonald House, and that he wanted to see us back tomorrow in clinic. 

So the plan is to return tomorrow for labs, an ultrasound, and a clinic visit.  Our clinic appointment with him isn't until 4:00 p.m. Chicago time.  We will leave straight from our appointment to head home. We are beyond excited!!!!  We will be tired, and it will be late, but it will be all worth it to be home again.  McKenna is so excited!  I have a feeling she feels like tomorrow is Christmas Day! 

It was so nice to walk out of those hospital walls this afternoon.  Macy and I had not left those walls for 15 days.  It was our first chance in over 2 weeks to breath fresh outdoor air.  It was AMAZING!  It was a challenge getting back to the RMH.  Macy had to climb 3 steps to get in the bus that runs between the RMH and the hospital.  It was a very bumpy ride too.  Then she had to walk from the bus, down an alley, and into the building.  It was the longest she's walked so far.  I was so proud of her!  We had a wheelchair waiting on her inside the RMH, and we were so thankful for that!  While she relaxed in the room, I headed over to Whole Foods to get some things to make Macy dinner.  The House serves dinner to all of the houseguests, but it's not gluten free, so we always need to cook for Macy.  After I got back, she wanted to go for a ride around the house, and then watch the dogs that go outside at the apartment complex next door. 

We all had dinner, and then Macy finally got to take a shower.  She hasn't showered since April 2.  As I got her in the shower, placed on the shower seat, and started washing her hair, I looked down to see tears streaming down her face.  She was sobbing.  I asked her what was wrong, and she said it was her scars.  She said, "I look horrible now.  All I can see are these scars."  Talk about heartbreaking.  I was able to calm her down, and told her that we would finish our shower quickly so we could talk about it.  Poor, sweet girl!

She's not too worried about her stomach scar.  She's had that one before, and knows what it looks like when it heals.  Also, it's hidden under her clothes.  Even tankini swimsuits can hide it if she wants.  It's the great big scar running down the side of her neck.  She can't hide it.  Everyone will see it, and people will look and stare.  My mom and I explained that those scars are her trophies!  She should be proud!  We also explained that anyone who knows Macy doesn't see those scars when they look at her, rather they see one of the strongest and most inspiring girls they've ever known! 

So please, try not to stare.  Try not to make sweet comments like, "wow, your scar looks great!"  I know it's heartfelt, but she is a self conscious 13 year old girl.  I pray that kids are school are kind when she returns.  Trust me, I am arming her with what she can say in response, but it doesn't make it any easier for her when it happens.  My heart just breaks for her!

Pray for good lab work tomorrow, specifically that her Coumadin level is at a therapeutic dose.  Please pray for a good ultrasound showing continued flow in her Rex Shunt.  Please pray for a great visit with Dr. Superina.  Pray for our safety as we return to Indiana tomorrow night.  Please pray for Macy's stomach and incision pains to decrease, and her strength and stability to return.  Thank you for your continued prayers and support during this journey.  I will try to update from home, but I am not sure if I will get to each day.  Also, Macy is going to be continuing her recovery at home, and we just aren't ready for visitors yet.  We will be eventually.  Thank you for your understanding as we try to acclimate to life at home again!