Tuesday, October 18, 2011

The "F" word

Sigh...it seems it's all I can think about these days. I'm not sure why, but something has triggered it to move from the safe recesses in the back of my brain to the forefront. Any of my followers who have single ventricle kids don't even have to ask - you already know what word I'm talking about. For those of you who aren't, I'm speaking of the Fontan, the "final" stage in the palliative surgical approach to HLHS. I use quotations because for many kids it is truly the final surgery for a very long time and they have years, some even decades, afterwards with no surgical intervention. But for others, it's just the beginning of a different type of path, one that includes further surgeries and sometimes transplants and then rejection fears. The thing is, you kinda don't know which path you'll be on until you get past the Fontan. But in most cases, it is the final "planned" surgery - the route that we knew before Bodie's birth would entail the Norwood, the Bi-Directional Glenn and then the Fontan.

I'm usually really good at pushing Fontan thoughts to the back of my mind. We're in the glorious days of the "normal" Glenn life, where you're so far beyond the Norwood and Glenn you kind of forget what it was like, and you're so far out from the Fontan it seems like an eternity away. So you just kind of live life normally and enjoy life and do normal stuff. And you kinda forget your kid even has such crazy physiology. But then, as you creep closer to the Fontan, you start to remember. Thoughts start to seep in. Doubts start to creep in. And that's where I find myself suddenly.

I'm not sure what is triggering it these days, though I do have a few guesses. Since CHLA prefers to do their Fontans between 2 and 3 years old, we should still be a year, maybe 2 years out from Bodie's Fontan (we're looking at next summer or even Summer 2013 if he can hold out that long). So I shouldn't really be thinking about it yet. But a lot of surgical centers do the Fontan at 18-24 months, so maybe it's that Bodie is in that window that's making me think about it and I'm seeing some of his heart buddies gearing up for their Fontans. The knowledge that, were he at another center, he'd have already had his Fontan by now. Oh.My.Throw up now. Maybe it was watching him try to run around and keep up with Sierra and her friends at the museum this past weekend, where he got so winded and his little lips turned purple from all of the exertion. Maybe it's the rapidly approaching 2nd birthday of sweet angel Travis, a fellow HLHS warrior who unfairly and so tragically lost his fight last spring - the knowledge that, were it not for this stinking disease, he would still be here with us, celebrating his 2nd birthday running around and loving on his mommy and daddy, like he should be. Don't even get me started on the tears that flow when thinking about that incredible kid and his family. Ok, deep breath.

Yeah, I think I know why I seem to be fixated on the "F" word these days.

As moms, we are consummate multitaskers, right? Apparently, that even holds true with regard to our emotions. As I think of the Fontan, I am filled with excitement, that he could be "past" all of the surgeries we always knew were coming, that he would have the stamina to keep up with his peers (the difference between pre-Fontan kids, who, like Bodie, pant going up the steps and whose lips turn purple the second they start to run around, and post-Fontan kids, who can run circles around their peers, is amazing from what I hear). I am filled with gratefulness that, as far as we know, he is a good Fontan candidate (with the caveat, of course, that this could change at any time - but, from what we know right now, he should be a good candidate). This is not true for all hypoplasts, and some do have to go to transplant at this stage in their journey, if not sooner. I am beyond grateful that Bodie is still with us and we're even having the luxury of worrying about a surgery a year or further away.

But it is major open heart surgery. I know families who have lost their heart warriors to this surgery, sweet children they have come to know and love, children who have been interwoven so deeply into the fabric of their families. Families with children who have walked into the hospital for this surgery with game faces on, said "I love you" and "goodbye" to their parents and that was it. I know kids who've had strokes, who've had horrendous recoveries and one child who had to have a "Fontan takedown." I know of 3 kids alone this last summer who had staph infections and ended up going home on IV antibiotics. Sigh. THESE are the thoughts that hit me in the shower, that literally take my breath away, make me nauseas and start shaking, make me cry out of the unfairness of it all.

And yet I know of kids who breezed through, were home in a week or two and had relatively minor complications. The tough reality is that we won't know which camp Bodie will fall into. I can only hope and pray that we fall into the latter category. Truly, I know far MORE kids who fall into that last category than any of the aforementioned ones. And even many of the kids who had rough complications ended up ok when all was said and done. So, for tonight and all of the nights I find myself fixated on thoughts of the "F" word, I focus on those success stories - the post-Fontan kids I know who, despite whatever complications they did or didn't have, are doing incredible today. The kids who are finite examples of all of the HOPE there is for HLHS kids these days. Kids who, unless you saw their chests, you would never know what they'd been through. Today, they are my hope.

And Jesus is my ultimate HOPE. HIS promises and HIS love for my family, and my son, holds us together more than anything we could ever find here on earth. I take incredible comfort in knowing that HE loves my son far more than even I can fathom (which is such a hard concept to even understand as a parent, since our own love for our children is so immense). And for that, we are incredibly grateful.

And I focus on the here and now. Because really, when it comes down to it, that's all we have with anyone, healthy or not, right? We have the opportunity, today, to love our children and to cherish them. Thankfully, tomorrow will come in its own time, which affords us the wonderful opportunity to cherish just today. And to love these two children as much as humanly possible. What an incredible gift.

So I think, for now, I'll tell the "F" word to take a hike. ;-)



  1. #1. I love reading your posts. You have such a way with words.. so yes, I'll admit, I stalk your blog. :)

    #2. I know the "F" word brings forth a lot of doubts and fears for you and your family, Amy, and aside from all the struggles that Bodie has been through know that he has been strong enough to pull through it all. He IS a fighter and the "F" word will be just another notch in his belt, another string of beads. Hang tight and just worry about enjoying the now. Each day will unfold and bring with it another challenge or another blessing, or both. Always remember to focus on the present.

    :) Love and Strength to your family and especially the handsome fighter himself :)

  2. Oh how I despise the days/weeks/months before surgery. The mix of dread/excitement (to have it done) is nothing short of mental torture.

    I'm praying for your sweet boy.


  3. I am feeling you today and many days. We are in the post Glenn 'normal' life and it is so surprising how often we forget about Hope's heart. She is such an amazing little girl and unless you really know her...you would never know she has a heart defect. I think all hypoplast moms kind of fear the Fontan. I know I do. And...with so many hospitals wanting to do them at 18-24 months I always feel like maybe we should have moved to a different hospital and just had it done. I know that is crazy because I really like where we are and our surgeon (our hero) is a great man and saved her before. Hope is also really small and I don't think she would do as well now, so I am kind of glad we are waiting. Ughhh...all the emotions so often come up.

    I will be keeping you in my thoughts and prayers as I sit and think the same thoughts as you. We will probably be looking at the Fontan in the same timeframe too...2013 is the date I am choosing though (let's pray Hope will stay the strong little girl she is today).

  4. Oh Amy, I wish I could grab you guys and just yank you quickly through the Fontan so you can be where we are now! I could have written this post (and probably actually wrote some very similar) one year ago. I KNOW how scary it is to have it looming and nothing I can say is going to be able to take away that fear. As a post Fontan mama, my advice to you... push it out of your mind as much as you can because you thinking about it and worrying about the possible outcomes aren't going to change a thing. I know that is easier said than done. :) I drove myself just about crazy worrying about what could be. Think about how amazing life will be afterwards. No "F" word looming over your head just living. I know your fears and remember them as my own not that long ago. Keeping you always in my thoughts and prayers my friend!! (((hugs)))

  5. I am feeling and thinking so many of the same things BUT for the Glenn! Madison is having her Glenn in 2 1/2 weeks. Nov. 4th is the big day. I am scared to death, but also so ready . I hear post-Glenn I will get to relax some on exposure to germs (not that we will not be careful), that I may even get to take a breath with eating - not counting and fretting over every single cc, that Madison will not get so winded with things as simple as a bottle... But, the thought of handing her over makes me weak in my knees. Ever since we got her diagnosis, I have had to focus on one step at a time and that I truly believe God made her just as she should be . He has a plan for her. He will help give us strength.

    Best Wishes. Your family is beautiful and I love reading about your adventures!


  6. Hi Amy- this is my first time on your blog and I had to comments because our family is in such a similar boat. Our son, Luke, is 4 1/2 and we're in that waiting game for the Fontan. It will most likely be next summer and I am dreading it/excited for it/hating it/loving it. I just wanted to let you know I get it!

  7. I saw the title of this post on the sidebar of our blog and my heart skipped a beat. I knew exactly what you were referring to...ugh! I have had all of those exact same thoughts. I'm so ready and so terrified that I'm really just a mess about the thoughts of it all. I was working on a post the other day about Derrick and his windedness and how close the "F" word feels (but I haven't finished it). It's so, so scary.

    Know I'm praying for your heart, that you're able to put it out of the forefront of your mind for now and can enjoy those two adorable blondies you have there.

    I get it. I really, really do.

    Big hugs and lots of prayers!

  8. Praying for your sweet family always! Hugs!!

  9. Love this post - the unknown is just so scary, isn't it? I'll keep your sweet little man in our prayers - and you and your heart full of fear and worry too - I just pray that God will grant you continued peace!!