Over the past few weeks my anxiety evolved from not thinking about heading to Philadelphia, to not being able to get it out of my mind. The mental picture of Zoe donning a hospital gown pops into my head a few times a day. I guess the real anxiety comes with the unknowns. What is going on in her sweet little body? Why is her heart function lowered, how narrow are her pulmonary arteries and what is causing the high oxygen saturations? All questions we'll soon have answers to.
In a week and a half, we'll pack up once again and fly east. The first glimpse of CHOP always leaves me with a bittersweet feeling. How can it not? It is the birthplace of my warrior, the place that gave her renewed life and us, hope. While CHOP is everything positive, it also represents a lot of pain and heartache. The lump in my throat I get just thinking of the CICU and it's hallways. There is both joy and pain in those hallways - every day.
Our visit will be short and sweet. The shortest visit to date.
Zoe's pre-testing will take place on Thursday, July 6th. Caleb and I will need to be extra creative that day and entertain Zoe enough so that she'll cooperate for 1) EKG, 2) ECHO, 3) Chest X-Ray, 4) blood tests and 5) a physical exam. Good luck! It will be a long afternoon.
On Friday, July 7th, we'll return to CHOP for Zoe's scheduled MRI and catheterization. We do not have a time for her procedures yet, but will find out during pre-testing.
Best case scenario? Zoe's MRI is promising and she can forego intervention until the Fontan.
I'm not going worst-case scenario, because we all know what that is.
If her MRI is not-so-promising, she'll undergo a catheterization where her interventionist will take measurements within her heart and pulmonary arteries. If the measurements are not optimal, a discussion (during the procedure) will take place among Zoe's team and they'll decide whether or not she needs immediate intervention with ballooning or placement of stents in her pulmonary arteries or if she can continue without intervention until her Fontan.
I've already done more than my fair share of research and reading on all of the possible scenarios. Zoe's growing accustomed to my research and began her own - reading all about her condition as written by the experts at CHOP.
As always, we'll keep the blog updated while we're in Philadelphia. We're excited to see some friends (old and new) during our trip and show off our amazing heart warrior to all of the families we've yet to meet.
I don't like this post. Not because of the writing (it's beautifully written, as always), but because of what it represents. I don't want to think of anything happening to sweet Miss Zoe. :-( (Preaching to the choir here, right?) So I'm going to pray and visualize positive scenarios - a good MRI and that's where the medical stuff stops this trip! Huge and kisses to sweet Zoes.
ReplyDeletexoxo,
Amy & Bodie
Sending many prayers your way that surgery is not needed at this time and that precious little Zoe can wait a while for her fontan! {{{HUG}}}
ReplyDeleteWe'll be keeping you guys in our thoughts and prayers. You are so right- the unknown is the scariest things about our special little hearts. Hopefully Zoes isn't hiding any secrets and all will be well and left for the Fontan. ((((hugs)))
ReplyDeleteI will be PRAYING for a very quick, easy visit with nothing but good answers. Sending good energy your way. Jake sends Zoe a big heart hug and said to tell his girlfriend to kick some butt!
ReplyDeleteWe love you guys!
Kathy & Jake
I'll be thinking about you guys and hoping that sweet Zoe can avoid intervention and wait for the Fontan. You guys are always in my thoughts and in my heart.
ReplyDeleteSending you love and hugs always.
~Alexia~
Stacey, Please know that you are in my prayers. Praying for a quick and easy visit with positive results. Thank you so much for the love and support that you continually give to our Jacob (I hear he is Zoe's boyfriend!)
ReplyDeleteGod Bless You and your sweet family.
Barbara Baker (Mimi-Kathy's MIL in Missouri)
I have such bitter/sweet feelings for CHOP too. I am sorry you have to go back for a visit so soon. I will pray that all will be okay, and Zoe will amaze them all with her strength. I will be thinking about you constantly. Loves- Heidi Gunnell
ReplyDeleteYou described those halls so well - and I feel a lump in my throat for you... I'm sending so much love and light your way, Zoe's way - prayers and love and care. Sweet little Zoe - you are loved and prayed for!
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