Day 2: Macy's Journey with the Rex Shunt

Macy had a good night overall.  We had some abnormal reads on her cardiac monitor.  We are still not sure if it was the leads, machine, her, or a mix.  It only did it while she moved around, and was fine while she slept all night.  Regardless, it prompted the doctor's to order an ekg this morning.  They had to contact our cardio at Riley and have him send over her previous cardiac tests to compare.  The one today was comparable to her last one, so we are still good to go with surgery tomorrow.  Kiddos who have repaired TOF heart defect can typically have abnormal ekgs, but it all depends on what is their "normal". 

They let Macy leave today!  It wasn't until 1:45 this afternoon, but she got to leave!!!  Woohoo!  In more positive news, we finally got a room at the Ronald McDonald House.  So we headed there, and she jumped in the shower right away.  She said it was so nice!  I must say, she was a little stinky.  Those teenage girl hormones, no shower for 2 days, and not allowed to put on lotion or deodorant before surgery makes for a stinky girl.  We walked next door to Whole Foods, and picked out a dinner that I could cook for her.  She was so excited when she found gluten free Boom Boom Shrimp.....pretty close to Bang Bang Shrimp from Bonefish Grill.  She said it was very good!  We hadn't planned to all be eating dinner at the RMH tonight, so we weren't prepared, but we'll take it!  Jeremy and I ate the dinner the volunteers served. 

We have spent the rest of the evening relaxing in one of the family rooms.  I am missing McKenna like crazy.  It broke my heart tonight during our video chat when she asked, "when are you coming back?"  I had no answer for her, and it's only been 2 days since I've seen her.  My heart is so broken not having my whole family together!  I know my mom is taking very good care of her and loving on her, but it is still so hard. 

We head back bright and early tomorrow for the Rex Shunt surgery.  We are scheduled to arrive at 6:15 a.m. with surgery at 8 a.m. (Chicago time).  I will most likely have a better time frame after talking with Dr. Superina tomorrow, but we haven't been told how long this surgery will take.  Some previous families that have had it done were told 4-6 hours, while others took 8-9 hours.  We are praying hers is pretty straight forward.....she had the surgery on Monday to close off the shunt, as well as imaging on her neck veins.  So the surgery tomorrow should just require the harvesting of the neck vein, and placing it. I know it's not that simple, obviously, but some of the other cases I know had to have other things done.  She will not go to recovery, however she will go to the ICU.  Once she is there and doing well, they will call me and Jeremy to join her.

I reminded her tonight that she will probably be in some pain when she wakes up, and that pain doesn't mean something it wrong.  She will have 2 large incisions.  One on her neck, and the peace sign again on her belly.  Or the Mercedes symbol as she says....she says she's got fancy scars!   Following the bleed in December, when she gets a pain in her belly or chest, or other funny symptoms, she automatically thinks something is wrong.  I told her that she just needs to make sure she communicates all of her pain so that the doctors and nurses can help her manage it. 

We will try to update as soon as we can tomorrow.  Prayers warriors, bring on the prayers!  Pray for The Lord's hands on the surgeons' hands tomorrow.  Pray for Macy's body to do its thing tomorrow.  Pray for me and Jeremy as we wait for great news tomorrow following surgery.  Pray for McKenna at home, since I know she will be worried about her sister, and missing her family.  Pray for a great response from Macy following surgery and a speedy recovery.  Bring on those prayers!!!!