Things have repeatedly worked themselves out. I've had people ahead of me work out the details. Trauma has eluded me.
But now I'm the adult.
I'm the parent of a little boy with a broken heart that needs me to step out of my comfort zone and seek services, alternatives, a better outcome. I have no clue what I'm doing and think I'm probably about to step on a lot of people's toes, but I guess that's what being a parent is about sometimes.
I've shared a few times that Gabe hasn't been given great odds for long term survival.
His heart is too healthy for immediate action but too sick for anything lasting. We've been given the sole option of waiting. Waiting for sickness, for suffering, for his heart to literally stop working.
While I love his cardiologist, she is not giving us any options other then transplant and I've decided that's not good enough.
In the past couple of weeks, new developments have been made in the treatment of HLHS. Gabe may not be a candidate for these procedures, but it has sparked a new passion in me to keep looking. I can't settle in and wait for his heart to start dying.
After doing a ton of research and talking to quite a few other Heart Moms, I've decided to send all Gabe's information to the children's hospital in Boston. After reviewing his charts, we will most likely hop on a plane for further testing in Boston.
It's my hope that getting other opinions might offer up some different options.
A little more hope.
10 comments:
Good for you Nicole! Even if Boston feels transplant is still the best option at least you can have a little peace in knowing that you've gotten a second opinion and no where better from than Boston. Sending thoughts and prayers to your family!
Hi Nicole, this post really broke my heart. You are SO right and SO strong to be fighting for your son. I'm not sure if you've ever connected with this blogger, but her child also has HLHS:
http://mendingheartsandbendingknees.blogspot.ca/
Blessings!
Nicole,
Gabe is blessed to have been given a mother like you. We are to go to the "ends of the earth" for our children, especially when we believe it is the right thing to do. Be encouraged that you are doing the right thing until God places it in your heart that what you are being told is final/or what you should do regarding a transplant. If a transplant is necessary, then I believe that He will give you the peace you need regarding the matter.
So glad that you are seeking out a second opinion. There is nothing wrong in doing that. Praying that Boston can give you some clear answers to what is best for Gabe. {{{HUG}}}
Hi, I'm a lurker, but I thought I would step out of the shadows to comment on this post. :)
First, thank you for sharing Gabe's heart journey with us. He is an incredible boy and you are an incredible mom to him. I know that seeking a second opinion may seem very scary, but I think you are doing the best thing for him! It never hurts to get another opinion from other doctors. Even if they can't offer other treatment options, I think you will be a better advocate for Gabe by going through this experience.
I live in Boston and love your blog. Please let me know if I can help with anything! Metzger.sarah@gmail.com
My first cousin had something called dilated cardiomyopathy (or an enlarged heart)...by the time we found out it was to late for anything but a heart transplant (he was 13)...fast forward 12 years and his daughter is dignosed with the samething (he talked to his doctors before having a child they told him not to worry)...they caught her's a little sooner and tried to treat it with meds. So I know that waiting feeling...do you hope for the meds to work...or for her to get worse that she can get the transplant she needs. She did end up and have to have a transplant at 9 months of age.
But your a mom...go with your gut! It's not going to hurt to get a second opinion.
oh, wow. this just broke my heart. will pray!!
You are such a good mommy -- praying for you and for your sweet Gabe!
I'm praying for Gabe and you. I know that God doesn't pay any attention to the odds that medical people like to talk about.
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