Saturday, September 14, 2013

Our Fontan Success Story

Zoe rocked the Fontan.  Period. 

Immediate extubation without consequence, great pain management (off all pain medication day 5, including Tylenol), walking less than 24 hours post open heart surgery. 

Zoe's post-Fontan stroll...

With such great results and speedy recovery, I've been asked a few times, "what's your secret?"  I thought, while it's fresh in my mind, I'd share our Fontan story.  I am confident that each step we took, set Zoe up for her best possible outcome.  So, here are my collective thoughts on how we got to where we are today.  

1.  CHOOSE WISELY. 

By far, this is the first, most important step in this HLHS journey.  From the day of Zoe's diagnosis, we educated ourselves and did our research.  We received three opinions (local and distant) on her heart defect.  We compared outcomes and data provided to us from differing centers.  We met face-to-face with surgeons and cardiologists who may be part of Team Zoe.  And, we followed Zoe's current cardiologist's advice... "always go with your Gestalt" - that gut feeling, what you know and feel is right for you, for your child.  We did.  And landed ourselves in Philadelphia with experts in HLHS.  Our surgeon, Dr. Tom Spray, is by far one of the fastest, most skilled surgeons in the world.  His bypass times are unreal, his technical performance is noticed (yes, even on echo).  The experience of our Philadelphia team increased Zoe's post-operative performance and healing.  If you know how to manage post-operative complications appropriately, you cut down on significant complications and permanent damage.  We know that a large portion of Zoe's current success begins with our wise choice to travel for her invasive care.  Here at home, we chose wisely and receive her local care with a cardiologist who works well with the rest of her Philadelphia team (and, most importantly, with us)!  For more information on this subject, read this well-written article by Dr. Anthony Rossi on "How to Choose a Congenital Heart Center."

2.  PREPARATION

Prior to Zoe's Fontan, I conducted a LOT of research.  In fact, over the past three years, my brain has been a sponge - absorbing all things HLHS.  My brain really ramped up the last few months leading up to the Fontan.  I play an active role in Zoe's medical care.  I'm informed, I educate myself, I ask questions.  I asked myself, therapists, fellow Fontan families, and her cardiologists, "what can I/we do to enhance Zoe's Fontan outcome and recovery?"  The answers received helped mold our plan of action. 

First, I managed what I could control: eastern medicine and holistic modalities.  Most hospitals in the United States do not offer eastern medicine techniques as complimentary treatment... so, I took it upon myself to learn.  I researched Reiki - a form of energy healing, interviewed Julie Motz (who worked in Dr. Oz' operating room as an energy healer), familiarized myself with essential oils and talked to therapists about best practices to prepare Zoe for her upcoming open heart surgery. 

I began using essential oils at home, approximately 6 months prior to the Fontan.  Zoe grew familiar with their scents and I knew which oils gave her a sense of peace and calm.  I became certified as a Reiki Master a few weeks prior to Zoe's Fontan.  In talks with Julie Motz, I knew the practice of energy was crucial to a speedy and successful recovery.  In fact, I was pleased to see that Children's Hospital Boston has Reiki Masters on staff, within their cardiac unit. 

Communication played a very large role in Zoe's Fontan success.  I talked to her, in depth, regarding her past surgeries and the Fontan.  She watched video and looked at photographs of herself pre- and post- Norwood and Glenn.  She UNDERSTOOD that although she was having open heart surgery, she would also recover - heal, feel better, and go home.  Her mind and body were in concert with this narrative.  She looked at photographs of this process (her birth, her family support system in the hospital, her surgery, her recovery, her return home).  The process of what was to come was very clear in her mind.  I also spoke to her about the operation itself, what Dr. Spray would do, what her body needed to do to recover quickly.  She voiced to her body what her liver needed to do, what the role of the chest tubes were, etc.  Much of my dialogue with Zoe was derived from pointers from Julie Motz, which I'm willing to share with anyone interested (just email me at stacey@sisters-by-heart.org).

Prior to leaving for Philadelphia, we incorporated a lot of play therapy (at home, led by mommy).  Zoe has a doctor's kit and we took her stuffed animals' blood pressure, pulse ox, placed IVs, performed echos and ekgs, etc.  If I knew how to do the Fontan, we'd have done that too!  We read Franklin Goes to the Hospital to help Zoe comprehend that having surgery, and her feelings, weren't abnormal. 

All-in-all, this preparation piece is key.  Preparation prepared not only Zoe, but also myself, Caleb, and Emmy on what was to come.

3.  PUTTING IT IN TO PRACTICE

Zoe received Reiki treatments (with regularity and surgical intention) a week prior to her Fontan.  As many of you read on prior blog posts, myself and Zoe's "Uncle Brian" both gave Reiki - during surgery and immediately following surgery.  We focused on her heart (obviously), liver, grounding her, emotional well-being, and gastrointestinal tract.  Zoe's infamous for blood chemistry being off following extubation, so our main initial goal was the liver, where anesthesia and toxins are processed.  Zoe received, in total, five hours of Reiki in her Cardiac Intensive Care Unit immediately following her Fontan.  We were quite encouraged by the support of her nursing staff - who've seen Reiki assist in recovery.  During Reiki, we played soft, soothing music (Garth Stevenson) and diffused essential oils (yes, we had a private room). 

For gastrointestinal issues (i.e. constipation), we also had Zoe doing yoga poses (twists in bed) and abdominal massage.  This proved to be VERY EFFECTIVE!  Zoe held this pose for several minutes with assistance.  We did use quite a few of these modalities together (i.e. reiki the gut, DiGize oil, twists, and massage).


In addition to reiki, aromatherapy (suggested Young Living oils are Lavender, Trauma Life, JuvaFlex, DiGize, Valor), yoga and massage, we also played some of Zoe's favorite tunes (music playlist created by dad and Zoe).  The music proved particularly useful when she began recovering, walking, and becoming more active.  We held dance parties in the CICU! 

4.  ATTITUDE

Never, ever underestimate the power of a positive attitude.  From our beginning talks about the Fontan, we remained positive and encouraged Zoe that this was simply part of her journey.  Were we scared? Of course!  But we knew we'd done everything possible - compiled a great team, created a plan and all would be well.  Our kids feed off of our energy, so I wanted Zoe to feel our positivity and make it her own.   Nurses in the CICU and step down unit were amazed at Zoe's positive attitude.  They commented that many HLHS children coming off the Fontan go into a "funk" and are "depressed" for a few days.  I can honestly say, Zoe (while yes she grew cranky and wanted to leave), she never felt despair or depressed. 

Day 4 - post-Fontan

In fact, the day after discharge from the hospital, as we were walking in Philadelphia, Zoe turned to me and said, "Mom, I'm so glad I got my heart fixed!"  Pretty amazing statement coming from a 3-year old just one week post open-heart surgery and acclimating to a brand new systemic circulation. 

5.  ARM YOURSELF

One of the greatest tools we had during recovery was - incentives!  We created a "wish list" on Amazon for Zoe's friends and family to show their love and support.  Each time Zoe had a particularly rough event at the hospital (IV placed/removed, chest tube removal, catheterization, blood draw, drinking required fluids, etc.), we provided her a present from her wish list.  We included items on her wish list that would brighten her hospital room as well - window markers and wall stickers.  Not only did the presents provide entertainment, but we told her who each present was from and why they sent it - creating a loving and supporting environment... AND LOTS OF FUN! 

Another great tool is the Beads of Courage program.  I'd never actually strung Zoe's beads, but found this a huge benefit post-op because Zoe had a great time stringing her own Beads.  The program was created here in Arizona, at the University of Arizona.  You can read more about the program HERE


I hope you find some benefit from our Fontan story.  I know some or all of our modalities may not be for everyone, but take or leave what resonates with you.  Explore your options and empower yourself and your child. 


I'll leave you with Zoe's display of Fontan emotions... 




Heart hugs from the Lihns - and Uncle Brian!



15 comments:

  1. Stacey - thanks for posting this. We are not very far in our HLHS journey - I am 31 weeks pregnant with our first baby - but this is so encouraging and helpful to see families that are able to stay strong and get through this journey together. I look forward to continuing to read your blog and Zoe's journey.

    Thanks,

    Lauren Clay
    Jackson, MS

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  2. Amazing story, we are planning for our Fontan this summer and it is so good to hear your wonderful story. How did you start talking to Zoe about her heart? My almost 3 year old doesn't seem like he would understand that conversation. Although he is a rock star at anticipating what happens next at the docs office (ie leaning forward so they can listen on his back after his chest).

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    Replies
    1. I had this same concern with Zoe not understanding what I was telling her about her heart. Julie Motz told me that she will understand, just use easier to understand terms. I told her that Dr. Spray needed to complete her heart repair, that her blood flowing from her heart to her body would be improved, that her liver (she knows where her liver is and what it does) needed to work extra hard after surgery so she could get better faster. I really did treat her like a little adult when explaining her heart and recovery process. Kids are able to absorb/comprehend much more than we give them credit for. I didn't know that I quite believed that (when Julie Motz told me that) but I sure believe it now.

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  3. We are also preparing for a Fontan this summer and I very much appreciate you sharing this story.

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