MiaBella Brickey

That means, despite the rapid onset and progression of Mia’s Miracle Ride (sounds like and reminds me of that stupid Bart Simpson ride at Universal Studios…….. I ended up having to close my eyes, look backwards, and tried not to puke all over my son, who thought it was the best ride in the world!  yea….. about that much fun), this ride is proving to be a slow one. And that is fine. Well, it’s not exactly ‘fine’, but it is the way it is. So, we CHOOSE to be fine with it. It’s reality.

Again, I don’t know about all of you, but because Mia went from mostly ‘normal’ kid, to puking, to myocarditis, to heart block and V. tach, to complete cardiac arrest, to ecmo heart and lung bypass, to heart transplant list, to transplant, to off ecmo, to incredible post op condition, to increased lung disease and schmutz, to up and down, to essentially ‘Today’……. all in about 2 weeks!!….. I think we all got used to such a frantic pace that we subconsciously thought or expected the recovery to progress at the same Go Big or Go Home pace!

And, we are all beginning to see and accept what those with more experience have known all along. That Mia’s recovery will be long, slower than any of us want!, and checkered with those small baby steps backward, in between the forward steps and jumps.

So, now it’s a matter of trying to stay on-top of the pain; keeping her comfortable enough that she doesn’t panic and fight the respirator, but aware and awake enough so that she can help us get the schmutz out of her lungs!

Interesting tid-bits:

1. She is DONE with her new purple Chuck Taylor’s!! We keep putting them on her throughout the day to help prevent ‘drop foot’, and the shortening of the achille’s tendon, and she has figured out she HATES it.  😉  When she feels me trying to put them on she begins moving and trying to shake her foot so I can’t get them on!  the little stink!

In the same vein, she dislikes the leg ‘boots’ than alternatively squeeze her calves with air bags.  She tries to kick those off, too.

*You should have SEEn her face and the scrunched up forhead a few minutes ago when I put them back on.  2 hours later she convinced the nurse to get ’em off!  Now, she’s sleeping like a log. Who sleeps in their shoes, anyway?? duh, dad!

2. She LOVES to have her feet and legs massaged and rubbed! We use a special recipe of lotions and potions to massage her little toes and bipedal traveling pads! And when you’re done, she wiggles her feet or toes, meaning “No! Don’t Stop yet!!” no matter how long you’ve been doing it!

3. Froggie. Yep, she LOVES the Frog pose and leg position. Every nurse and P.T. out there will know exactly of what I speak. What is it Shakira says? “The Hips Don’t Lie”? Mia’s going to have some pretty sore hips when it comes time to walk again!  We move her legs every 15 minutes to try and reposition them, and she just plows her way back to Froggy pose!

4.  She digs the Closys mouth swab sessions. Of course. Smart girl.

5.  Mom painted her finger nails today, to match the sparkly glitter Dr. Angela put on her toes a week or so ago. (Thanks Angie! They still look awesome!) You know you’re important (and lucky!) when you’ve got plastic surgeons doing your pedicures!

6.  If you ask Mia when she wants to leave the hospital, she’d probably say “yesterday!”, but we’ll settle for “when its right”.

7.  She continues to get incredible notes, cards, emails, and well-wishes from the most amazing people!  And the love and healing energy you are all sending up her way we are sharing with the other beautiful Angels here in this place they call the C.I.C.U. and P.I.C.U. They are all so incredibly beautiful, and they all deserve a second chance, like Mia.  But they all won’t get one.  And this humbling reality is heavy and difficult to accept.

If you ever think your life ‘sucks’, ….. come on up, and spend some time in a p.i.c.u., or any I.C.U., for that matter.  If your perspective on life and your blessings doesn’t shift…… then you’re either a first rate dork, or you’re already dead. Or, you’ve already figured out how incredibly blessed you are and an enlightened soul? I hope it’s the latter.

Me? I was slightly on the dork side……. but I figured it out pretty quickly. And now I stand in awe to the power of love, the importance of prayer and faith, the miracle of medicine, and the irreplaceable beauty of the people that live on these floors and in hospitals all over the world. They’re called Nurses, and Doctors, and Tech’s, and the list goes on.

And the ice-cream in the Nutrition Room is pretty tasty, too! And, just to tell you, there’s an ENDless supply of ‘truck stop coffee’ to rot yer gut!

Thanks Annette, for the hair cut tonight. I owe you. You’re a sweetie.

And once again, Staff Sergeant Jordan Goers and all the rest of the men of 2nd Platoon, Bravo Battery, 2nd Battalion 8th Field Artillery Regiment, have gone and blown us all away! I can’t wait to show you all the pictures they sent.  If I can figure out how to use this computer, I’ll upload the photo.

Tomorrow: we may try to get her up into a physical therapy chair? That would be cool.  And maybe some in-room jammin with the Music Therapy folks? Time for some Dylan, if you ask me.

Have a great day, beautiful people!!

(Dr. Ngan just told me I have to go to sleep. Dr.’s orders. G’nite.)