Back to Normal

Prior to Zoe's Fontan, based on stories I'd heard, I figured it would take a week or so for Zoe to return to her normal self.  Well, that simply isn't the case. 

She woke this morning, happy as a clam - talking about how we need to bring Emmy next time we come to Philadelphia.  She insisted on going for a walk today, so we did.  Lots and lots of walking (with Zoe mainly in the stroller). Hard to believe she's not had any pain medication (including Tylenol) since Sunday evening!

We decided to do some sightseeing and check out historical sites we've not been to, but always had on our list of "things to do... next time."

Zoe, the incredible trooper, insisted on riding the carousel in Franklin Square, shared my hot dog and fries and played mini-golf.  Seriously, this girl was in the Operating Room a week ago today having her chest opened!

Yes, this seal was sanitized!

18 Holes of Mini-Golf (we did skip a few)...

Not following the "no arms above head" rule.

We also visited a place Caleb wanted to check out - City Tavern.  It's the oldest pub in the United States, opening in 1773 and site of the first 4th of July celebration.  They serve beer made from recipes of George Washington, Ben Franklin, Thomas Jefferson, Alexander Hamilton.  We decided to get a flight, since we wanted to try them all. Pretty darn good!

Flight of Washington, Franklin, Jefferson and Hamilton brews

As we were walking around the city, Zoe said to me, "Mom, I'm glad I got my heart fixed."  All this time, I worried she would be angry and sad that we forced this journey upon her.  Today, she showed me that her soul runs deeper than I could've imagined.  She feels good, and is happy.

One of my favorite moments today, Zoe walking in Elfreth's Alley - the oldest residential street in the United States.  She walked up to this house and asked, "Is this Obama's house?"  Apparently, the oldest residential street isn't impressive enough, she wants to go straight to the big house...

Elfreth's Alley

Zoe's favorite on Elfreth's Alley, "Obama's House"

Tomorrow is Zoe's post-op follow up appointment with her cardiologist at CHOP.  We expect nothing but good news.  It's a bit surreal still; we couldn't be more pleased.  We're very much looking forward to heading home this weekend and seeing Emerson.  We've done lots of Skyping this past week, but I really could use a BIG HUG from this sweet princess!

See you soon, Emmy!

Hasta La Vista!

We stayed the course, and all is well.  Zoe woke to the echo tech, then the X-ray tech.  The echo tech showed us Zoe's repair.  Such an incredible sight to see!!!  It's truly remarkable.  

The best part, when the tech told Zoe that her "heart is smiling."  I laughed and he said, "no, I'm serious..." He turned the screen closer to me and pointed out the smiley face that her heart tissue formed on echo.  If I wasn't so ecstatic, I'm certain I'd have lost it right then and there.  I truly feel that Zoe's heart is smiling, so seeing that image (and I apologize in advance for not having my phone in hand to snap a photo) confirmed that her insides are just as happy as her outsides :)

               (Last chest X-ray!)

At morning rounds, the cardiac team continued to be blown away by Zoe's recovery.  We had a few candid conversations with practitioners who indicated the recovery is far superior to what they've seen as of late.  We are so stinking thrilled!

Zoe's cardiologist, Dr. Szwast, reviewed Zoe's pre-discharge echo this afternoon. The repair is perfect.  Her heart IS happy!

WE ARE FREE!!!  It's official... Less than one week post-Fontan and we're outta here!

Today, my wardrobe couldn't be more appropriate!  

We plan on enjoying Philly for a few days while we wait for Zoe's follow up appointment before we get the "all clear" to fly home.  Assuming no fluid accumulation around the lungs, we'll be back home this weekend!  

Aunt Stephie and Uncle Paul are coming Wednesday to help out with Zoe... but, instead of the original plan of being inpatient, we'll be able to visit, continue recovering and celebrate outside of CHOP!

Zoe is super excited to be leaving shortly.  She picked out her discharge outfit.  She thinks it's her perfect wardrobe for today - camo shorts and a Phillies tee!  

Today's Plan

We like today's plan.  We're hoping no one goes off script!  This morning Zoe will have her discharge echo and X-ray to confirm all is well.  Next, some follow up planning to determine when we can head back to Phoenix.  We'd planned on sticking around a full week post discharge, but Zoe's recovery has been so tremendous, we may be able to squeeze in a follow up visit later this week and head home this weekend!  

Please send good vibes today that all goes as planned!  The pharmacy has our Rx's and is awaiting a thumbs up post-echo.

While you're thinking of Zoe today, please also send some good thoughts and prayers to her fellow HLHS buddy, Bodie, who is needing to head back to the OR this morning following his Fontan last week.  He needs his pacemaker adjusted and sadly must have his chest reopened.  His mom, Amy, is one of my dearest friends and could use the uplifting spirit of Team Zoe.  

  (Zoe and Bodie, First embrace, circa 2011)

We'll keep you posted.  For now, Zoe is passed out while the sun rises over downtown Philly. 

Drumroll, Please...

This morning's chest x-ray looked great and Zoe's chest tube was removed about 10 minutes ago!  We now have no tethers, except her ECG leads.  Can you feel it?  We just took a huge leap towards discharge.  Another chest x-ray in a few minutes to confirm all looks good post chest tube removal, then morning rounds to find out "the plan."  We still need labs, an echo and to get all of our medications squared away.  I'm not going to speculate on a discharge day as all heart moms know that's bad juju, but it's soon...  LESS THAN ONE WEEK POST-FONTAN!

Zoe, you're incredible!  Another update coming after rounds...

Evening Update and The Voice

Rounds in the step sown unit didn't happen until late (around midnight), so we didn't take part.  Morning rounds with the attending will be much more informative.  

Zoe is recovering brilliantly.  She continues to do well.  Frankly, she's ready to leave, but for the chest tube, which hardly drained anything at all today.  We are hopeful they'll remove the chest tube tomorrow.  An early morning chest x-ray will confirm for sure if it's ready to come out.  So, we'll certainly have more information after morning rounds.  

On a totally random note, a couple of years ago, The Ryan Seacrest Foundation built a recording/broadcast studio, located in the lobby of CHOP, called The Voice.  CHOP consistently has celebrities visit the studio to entertain and raise the morale of the many patients at the hospital.  On Friday, we had the opportunity to meet actor/musician Jesse McCartney and DJ Pauly D from The Jersey Shore.  While Zoe has no idea who they are, we thought it would be cool to get autohraphed pictures for her.  

Stacey and Jesse McCartney

Caleb and DJ Pauly D

The autographed photo DJ Pauly D signed for Zoe

Hopefully, we will have good news to report after morning rounds, i.e. that the chest tube will come out.  We'll update after rounds. 

"Uncle" Brian

What can I say, other than... this blog post is dedicated to my BFF, Brian Golub, who put his life on hold for a week to be here with Zoe, Caleb and myself during Zoe's Fontan and recovery.

He's been nothing short of a miracle-worker these past few days - giving reiki, holding Zoe in yoga poses to help her bowels, making her laugh and holding beauty parlor hours.

I know that his presence made a huge difference in Zoe's recovery.  

Just days before Zoe's Fontan, Brian received his Reiki Master attunement and is full of healing energy.  I sure wish everyone going thru something similar had an "Uncle Brian."  They're definitely kindred spirits and feed off each other's positive energy. 

Goofballs!

I could tell, this afternoon, when Brian left us to head to the airport, both of their spirits were a bit deflated.  Here they are, two peas in a pod, bidding a gracious farewell.  Thank you so much, Brian, for your undying commitment to Zoe.  Our deepest gratitude.

 

Another HUGE thank you, to my parents, who've been taking such good care of Emerson while we've been in Philadelphia.  Emmy started school (twice over)... long story... and my mom and dad have been troopers.  We're missing Emmy really bad and thinking we'll be seeing her sooner than later!

Emmy mailing Zoe a handmade card. (Thanks Atherton Family for thinking of Emmy!)

Zoe's doing fabulous.  She walked all the way to the atrium, up two flights of stairs and back to her room.  If you know CHOP's layout, that's a huge feat!  Dr. Spray's physician's assistant stopped by today and mentioned that they've "never seen a post-Fontan patient walk the day after surgery," on their own accord.  The entire cardiac team is amazed at her speedy recovery, will and determination.

Walking around feeling satisfied!

When we returned to Zoe's room, she decided to chill out and start stringing her Beads of Courage.  She's simply incredible.  Caleb and I couldn't be more proud of her and we know she has a full life ahead of her; she's going to do incredible things!

It appears that we're on the road to discharge soon.  Zoe's IVs have been removed and we're counting the last of the drainage from her chest tube.  I'm feeling removal is coming soon (perhaps tomorrow).  She's transitioned to all oral medications and we received a list of her discharge medications today - routine for CHOP a few days before discharge.

Many thanks, to all of you, for the continued love and support.  We really feel blessed to have you on this journey with us.  We felt surrounded by all of you during this hospitalization, making us stronger and wiser.

Caleb will blog later tonight after rounds and include some entertaining pictures from yesterday.  Until then...

Full Steam Ahead

Yesterday, Zoe continued to make progress in her recovery.  Due to a lack of "ins" and being "negative," meaning she was giving more output (urine/drainage) than taking fluids, she won herself IV fluids again.  Hoping more drinking today and we can turn it off.  

Zoe did a good amount of walking yesterday.  She certainly doesn't want to hang out in her room much... I don't blame her!  

We'll likely spend a good part of the day in the playroom today and we plan to head to step down with a room opening up soon. 

The best news yesterday... Zoe finally pooped!  She's been really uncomfortable and complaining her belly hurt.  With help from some yoga poses, reiki and glycerin, she got her bowels moving!  So, we're expecting a good day today.  Full steam ahead for Miss Zoe!  

Goals are:  more eating and drinking and less drainage from her chest.  

Overall, the team is really happy with her progress and have no real concerns.  

I have a feeling, this "Doc" may be seen wandering the CICU halls later today...

 

Thank you all for your continued good thoughts and prayers.  Besides a lack of sleep, we're all doing quite well!