Friday, April 4, 2014

Overdue Update...

It's hard to believe that nearly 2 years have gone by since my last post here. My sincerest apologies. We've been enjoying life, which is something I couldn't have even imagined being able to do at this time 4 years ago. The truth is, Rosemary has defied the odds and is living as full of a life as any other child her age.

Having HLHS does not define her, it has become her bridge to other people, and quite frankly from theirs to mine. Her life has inspired her family, friends, teachers and community to reach out to those suffering from heart disease and congenital heart defects. Last year, she was chosen as her school's "Heart Hero" for their Jump For Heart campaign through the American Heart Association. The pictures below are from 2013. Her school has been the #1 fundraiser for this event in our county, and one of the top 100 schools in the state of Maryland. Her school, alone, raised over $20,000 last year, something she was very proud of. Bringing awareness and raising funds for pediatric heart research is one of our goals as a family and this is part of our motivation to utilize Rosie's life to benefit others.

Rosemary and her PE teacher, Letty McNulty

Rosemary sits quietly as her PE teachers educate her classmates about her heart condition and that she is one of the many reasons the AHA raises money and awareness to promote healthier hearts.

Rosemary has been doing so well since her last surgery, so we decided to skip her annual heart catheterization last year. This decision was made partly because she wasn't showing any new signs of cardiac deterioration, and currently, the only thing left to do for her is to attempt the Fontan again or talk transplant. Her cardiologist and I were in agreement that because she was doing so well, we would revisit that discussion in a year. That year has passed, and at her 6 month follow up appointment last Wednesday, it was apparent that we needed to investigate exactly where she stands.

She had the usual routine, vitals, ECG, and an echo. During her ECG, I noticed that her heart rate was in the 40's and she usually sits in the mid 70's. I made a mental note and decided not to immediately worry but asked the nurse to let her doctor know. During the echo, I saw the same. Her heart rate fluctuated from the 40's back to the 70's. So her doc decided to put her on a halter monitor for 24 hours and get some labs done. He also mentioned that it would probably be a good idea to get her cathed again and once the results were back from all of the tests, to sit down with her surgeon, the cardiologist and Drew and I to discuss how to move forward.

......How to move forward.....

The realities of what this means for our family is something that I have been ignoring for the last 3 years while Rosie has been stable. I have distracted myself through nursing school, an accomplishment that is directly attributed to Rosemary's life. Having seen the amazing care that she received that kept her alive  was the internal catalyst that has led to a double inspiration to become an RN. It has been my goal since Rosie got out of the hospital. I knew it was something I could do and I wanted to do for her. 

Our family has regained a new sense of normal since March 2010. My other two children have been involved in school and sports and it's been wonderful to attend school events with Rosie in tow. We haven't had to do to much adjusting in our lives at all really, it's been smooth sailing. Auto pilot, if you will. It's been so nice watching her ride her bike up and down the street, each year riding a little further down the hill and she always makes it back up again.

As heart parents, we can't control much of anything with regards to our kids' hearts, they tell us what they need and when they need it. Aside from that, we're at the mercy of a seemingly nebulous free fall that will catapult us into any direction at any time, leaving us to constantly worry that the first sign of any illness or distress is a signal that there is something wrong with their heart. 

I choose to process her inevitabilities by intellectualizing the information that I can make sense of through my studies. Her numbers, her symptoms, symptom management. I mostly keep myself in a safe bubble of denial, which has worked for the most part. It's like wearing a pair of those horse blinders, I only see what's in front of me. It works until I hear of one of our own HLHS'ers suffering through the same struggles that Rosie has faced, and many times much more. It reminds me, daily, of how blessed I am to look into her eyes, to see her smile, run, play, laugh, smack her brother and sister, scream in see her live. 

Her continued quality of life is at the forefront of my desires for her. And I understand that even my best intentions will not be able to provide that for her forever. But while I can, I will. I have today. WE have today. 

God has a perfect way of revealing His timing. I just received an incredibly thorough report from all of Rosemary's specialists and teachers at her school. From Psych evals to every ED eval under the sun, she's gotten it and it will be reviewed on Tuesday of next week during her IEP meeting, two days before her catheterization. Looking at all of the information we will have, the absolute, most comprehensive information on how she is doing physically, mentally, socially and emotionally...we will have it all. We have time on our side right now as well, which makes going into a meeting with her surgeon prepared as possible. He's given us 4 extra years we didn't think we'd have. We're here, she's strong, and she's still fighting. In fact, I feel like she is the best she has ever been.

I expect that because she is bigger and stronger, that she will take to the Fontan again. I hope that her little lungs can handle the pressures. This was the surgery that caused her chronic pleural effusions and a 6 month hospital stay that nearly ended her life, again and again.

Her cardiologist mentioned the name of the doc who saw Rosie in January when she visited the ED at Children's, she is also the head of the new transplant department. I swallowed that with a side of denial, hoping that we won't have to visit that reality just yet. It is seemingly inevitable, but I want to give HER heart one more chance to keep her going. Knowing that someone else's child will have to pass for mine to live is an everyday reality that I cannot escape. It's not just that thought that makes me cringe at the idea. It's the reality that she will again have to succumb to such a deteriorating condition and endure such extreme pain and suffering in order to be pushed higher on the transplant list. It's a balancing act of keeping her here and keeping her comfortable.

We very well may get the report that everything is virtually the same and that we can continue to wait as we've been until something changes. I don't know. This is the part of being a CHD parent that I've gotten rather good at. Ninety percent of the time, I don't think about the inevitabilities because they're not urgent right now. I don't waste time and energy on things that I can't do anything about. Instead, I let my everyday family life blissfully consume me, I continue to forget about it while I can. 

We waste a lot of energy on the things we cannot change, even the struggles of yesterday. Doing that takes away from the energy we need to ENJOY today. Try to be a ray of sunshine for your loved ones, sick or not. 

I will update with more information when we have it. Until then, smile, laugh, love and make someone else's day better, because you can.

This was a long one. Thanks for reading.