Thursday, October 4, 2012

Living in the Heart World

Last May 18th, I was introduced into a world that I didn't even know existed, it's a world that I like to call the Heart World.  Before Abby's collapse I had no idea that were so many families that were living in this world.  It's not an easy world to live in, there are many ups and downs, and sometimes things can change from day to day.  We're a tight-knit group, when a heart kid has a problem, the heart world moms rally for each other, they do whatever is necessary to help each other get through the problem.  Every heart parent needs to be a part of this little community.  The support is incredible, and the friendships that are made are everlasting.  But, the only drawback is that because we are so close, when on of our heart friends isn't doing well, it's as if it's one of your own.  Because of your own personal experience, you feel what the parents feel, you just become deeply invested.  The past few months in the heart world have been an emotional roller coaster.  So many downs, extreme downs, but also many ups.  I want/need to write about a few of the kids that we've been watching so closely the past couple of months.  Their stories, and watching how their parents cope with things have taught me so many things.

Kaidence received her first transplant when she was just a baby.  Last year, out of nowhere, only 4 years after her first transplant, they found out that she was suffering from coronary artery disease and that she was going to have to be re-listed.  I was at Primary Children's with Abby the day they found out.  I'm grateful that I was there for Kaidence's mom that day, the news was devastating.  In August, after being on the transplant list for 292 days, Kaidence received her second heart.  Although there are still minor problems now, she is doing well at this time.

Matthew, another 4-year-old, also suffered from coronary artery disease and only a year and half  after his first transplant, he was re-listed.   A few weeks ago, Matthew had a heart attack while waiting for his heart.  He was immediately transferred to the CICU where he suffered more heart attacks. He was just barely holding on.  After 239 days on the transplant, 164 of those living at Primary Children's, and when Matthew was in dire need of a new heart, the offer came.  The timing couldn't have been more miraculous.  He had his transplant the end of September and is still in the CICU recovering now.  There have been quite a few complications, one of those being that he extubated himself, which just isn't good for a 4-year-old to do :) but he continues to get stronger every day.  I can't wait until he can go home, that family hasn't been together for far too long, 164 days is a really, really long time!

Kylie is still waiting for her transplant at Primary Children's right now.  Both Kylie and her mom have been living there for over 100 days now.  She's a very sick little girl and has spent many nights in Intensive Care.  This will be Kylie's first transplant.  She was so sick last week that they had to remove her from the transplant list for a few days while she recovered from an infection.  Thankfully, she's back on the list now.  Kylie needs her heart ASAP, she's running out of time.

The last heart friend I want to write about is Mia.  Mia is also 4-years-old, and had her transplant when she was a baby.  Yesterday, even thought Mia wasn't feeling 100% ,  her family left for Florida for her Make-a-Wish vacation.  They were so excited for this trip and had been waiting so long for this opportunity.  I don't have all of the details, but by the time they got to Florida, Mia was feeling sick enough that they decided to go to the hospital.  At first, they thought she had pneumonia, but after doing an echo, they determined that she was in rejection and that her heart function was only at 40%.  They immediately admitted her to the ICU and she went in for a heart cath last night.  During her cath, something went horribly wrong, and Mia is now on bypass (ECMO) fighting for her life.  I just can't imagine the anguish her family is going through right now,  and to be so far away from home and family and the doctors they love and trust, makes it even worse.  In a few hours they will transfer Mia to transplant center in Tampa.  Thankfully, they have family flying there now to help with the other kids so mom and dad can focus on Mia.  From what I've learned about ECMO, she can be on bypass for about 6 days. Hopefully, this will give her heart enough time to rest and to heal.  Things are still unclear at this time, we don't know everything, but we do know that Mia needs lots of prayers.  Things are extremely critical at this time.

Living in this heart world is scary.  It scares me that things can change so drastically in just one day, sometimes, just one hour.  Abby knows what's been happening with all of these heart friends, and it scares her too, you just never know.  One thing I do know is that heart moms are the strongest women out there, I've learned so much from watching the other moms in our our heart group, they are all such an example to me.  The other I know is that heart kids are fighters, they have a determined will to survive and they overcome things that nobody thinks they can.  The night Matthew was offered a heart, I realized something great, something that I needed to figure out.  I've always had such a hard time trying to understand why these things have to happen.  Why do we need to have kids that need heart transplants?  Why should these kids and their families have to suffer? No matter how hard you try, it's impossible to make sense of these things, but maybe we're not supposed to make sense of them.  Maybe, the bad things have to happen so that we are reminded and can recognize that miracles can and do happen.  I think about how many people were invested in Matthew's story.  There were so many people following him and praying for him, and investing their thoughts and energy in him.  Each one of them were able to be a part of that miracle.  It was the same thing when Abby got "the call."  There were people praying for her and following her story all over the world (literally!).  The day Abby received her transplant, they all got be part of something great, something miraculous.  Maybe we need the struggles and the heartaches so that we can recognize when a miracle takes place and so that we will continue to live for that hope. Little Mia and her family needs our prayers.  I'm sure they are in shock right now.  They were planning on spending the day as a family in Disney World, and instead they are watching Mia fight for her life in a hospital that they aren't familiar with.  Like I said, being in this heart world can be the greatest thing, but it can be the hardest thing too.


  1. You inspired me to write a post too. This heart world is insane. Such a love hate relationship. Good luck today, thanks for your strength!

  2. I can somewhat relate. While I am not a "heart mom" I am a "cancer mom" My five year old has cancer and I love the community of other "cancer moms" but I also find myself having heartbreak with the bad news and celebrate with the good news. I have follow your blog from the begining and always pray for Abby and the rest of your family.

  3. I think of Abby and your family so often especially since I see a cooler that is left at the front desk from a heart transplant we did a week or so ago. Protocol for ECMO at PCMC is about 6 weeks (they estimate the time the patient will need ECMO and if they believe it will be six weeks or less then they will put a patient on), though there have been patients on ECMO for longer than 6 weeks. As OR staff we recently had a training on it and it was really neat.