Monthly Archives: February 2016

CHD Week, A Perfect Time for a Cardiology Appointment

12291133_1105169376168503_3669892933410979358_oI feel anxious. Scared. Unsure. I go on Facebook. Bury my face in my phone, the distraction of other peoples lives, an escape from my reality. Then with one single flick of my thumb it hits me. Like a ton of bricks. My PTSD kicks in. I feel my heart racing. My chest feels tight and I feel panicked.

A mom. Doing her best. Raising Awareness for Congenital Heart Defects (CHD) has posted a picture of her child fighting for their life, hooked up to a million meds, lines coming from everywhere, a freshly cut open chest with drainage tubes, or even worst a chest that had to be left open to allow for swelling.

It takes me right back to a place of seeing this little person, that I love so much, fighting for his life, and I am completely powerless in helping him. It reminds me of all he has been through. It reminds me of the three times I’ve seen my son like that. On a bed, almost lifeless. A million machines. Beeping, wondering if that’s an okay beep or if something is wrong. Hearing the nurse say “the first 48 hours are very critical.” It reminds me of all the times I stood by his bedside desperately begging that he make it, that I get more time with him. It reminds me of having to hand him over and trust that these strangers are going to take care of my baby. It reminds me of this fight. That he needs more surgery, that he will never be ‘normal.’ That he will never be fixed. That I will have to hand him over again. That tomorrow isnt promised. That this is a life long journey.

I have moments where I forget. Where he is just being a typical 4 year old. Then I am quickly reminded that he is struggling to keep up with his peers and it hits me. All theses thoughts race through my mind. Some are positive, lots are not. I wonder things. I look back and reflect. Lots of times I am grateful. Mostly I am grateful but I am scared. Shitless.

My mind races

I wonder how many more surgeries he will have to have?

Why does my son, this innocent little boy, have to go through so much?

How am I going to be strong enough when I have to hand him over again?

Will he get to be an adult?

He cant even go to dance class anymore, he gets too winded. That fucking sucks. He loves dance. How unfair.

Do I push surgery? What about his quality of life? He cant keep up with his friends. I want him to be able to keep up. What if I do push surgery and he doesnt make it? I could never forgive myself.

Did I make the right decision to do the bivent. He is repaired but now he will have to have another surgery and Fontan could have been the last and final surgery.

Will he hate me later, for all I have put him through. I understand compassionate care and why parents choose to let their baby pass, but I have chosen to fight with him as long as he is willing to fight. Will he agree when he is….if he gets to grow up to be old enough to reflect?

I cant live without him.

I should take a million pictures. I want all these memories!

Im being selfish. So many parents and children have it worse than we do. I should be grateful. Carson is here, he is mostly thriving, and I should just be positive.

My son is badass.

So Is my daughter. She loves her brother with her whole being. She completes my little family. Am I doing enough to make her feel special too?

Ive got this, I was chosen to be his mom for a reason.

Normal things are hard sometimes. How will I do this? How can I do this? I shouldnt have to. No parent should.

I need to plan, and save, and live and make memories.

 

And now, after todays appointment:

I am wondering how  long is too long.

How sick is sick enough.

What about quality of life?

I dont have extra. How are we going to be able to make it to Boston when its time?

Will insurance cover it this time?

Boston finally got back to Carson’s cardiologist here. It’s his opinion that surgery should wait. He thinks the risk of surgery is greater than the risk of waiting.

Carson has a wall of his heart that is blocking the blood flow of the blood traveling from the ventricle to the aorta. Its MODERATE and the only way to fix this is to operate. The problem is that the wall of your heart is where all the electrons are that tell your heart to pump. Cutting out the part of his heart that is causing the narrowing comes with HUGE risks of heart block. Meaning the heart will no longer beat on its own and he will require a pacemaker. Plus all the “Normal” (insert eyeroll) risks of open heart surgery. He has had his chest opened three times and has significant scar tissue. It takes longer and longer each time to open him up and even get to his heart. He has conduit in his heart that will have to be changed as he grows so, without having talked to Boston, I am assuming they would also like to keep the number of open heart surgeries down as much as possible. Great news. Surgery isnt coming so soon. However, it leaves me wondering. More unsure. I have a million questions. I have no answers. I have a son and daughter who I love more than life and Id like to keep them forever. I plan on addressing my concerns to his cardiologist in Boston and then we will go from there.

I went into today appointment thinking Id get a copy of his echo (ultrasound of his heart) and send it to Boston, asking them to schedule surgery. I left todays appointment happy that surgery isnt so close but it left me wondering, and uncertain.

You can find us here. In this grey area.

 

 

 

 

 

It’s Been A While

I haven’t updated this. It’s been over 2 years, and the last post was about Alison, though she is just as important too.

We have been through a lot, so lets play catch up.

Carson is 4 years old. He is doing well, and is full of life and attitude. He is smart, and so animated. He loves adventure and is sometimes timid. He likes things that are familiar and is obsessed with Disneyland and space. He loves Sheriff Calie and Paw Patrol. He is such a joy and such a light. And Alison. My sweet girl is already 2! She is spunky and sassy. She knows what she wants and will stop at nothing. She is a snuggle bug who always wants to be close to her mommy or brother. She is starting to get shy around people she doesnt know but is very protective of the people she knows and loves. The bond that Carson and Alison have is amazing! Being their mommy is the best job in the world.

When Carson was 20 months old we traveled to Boston from California to have a bi-vent repair done. We traveled to Boston because our home hospital wanted to do a Fontan on him, which would keep his heart as a single ventricle. This wasn’t a horrible option but with him having two ventricles, with a hole between them it wasn’t ideal. So I sought the opinion of Boston Children’s Hospital and they said yes they could do the Bi-Ventricular repair.

The Fontan would have kept Carson as a single ventricle anatomy. This is great for kids who only have one ventricle to work with. Its a surgery that essentially re-plumbs the heart. It makes only oxygen rich blood go into the heart and out to the body. The issue is that the left side of the heart is meant for oxygen rich blood and the right side is made for non-oxygenated blood. Oxygen rich blood and non-oxygenated blood have very different pressures and over time the pressures on the heart can cause issues.

The Bi-ventricular repair basically reconstructs his heart to restore normal circulation, meaning closer to normal pressures in the heart and the oxygen rich blood is on the left side and oxygen poor blood is on the right side.

I chose to go with the Bi-Vent because it restored normal circulation to Carson’s body and organs. There is less risk of problems in his future but more risk up front. They said that it was a 10% chance of fatality vs 1% with the Fontan. We can talk about what its like to make these hard decisions later.

So we got on a plane, went to Boston and Carson had his Bi-vent repair done on Oct 15, 2013. They told us it would be a three month recovery time but my amazing son was discharged just 11 days after surgery! We came home November 1st and things were GREAT! His energy level was back, he was able to keep up with kids his age and I was so impressed.

Slowly over time Carson started getting tired, more out of breath, and sometimes complaining that his heart hurts. So over the past 2 years he has been followed closely but his cardiologist here in California. He has some tissue that is creating a partial blockage of the blood going out of his aorta and to rest of his body. It will have to be surgically repaired.

He has an appointment next week and I will once again send his records to Boston to get their opinion. I know they will agree that surgery will be necessary so I will ask them to schedule a date.

Boston did his last surgery, and they are the best of the best in pediatric care in general, but also in pediatric cardiology. I will do whatever I have to do to make sure he gets in the hand of the surgeons I trust. How I will hand him over again is beyond me.

Today he has his good days, and his bad days. Quality of life matters and surgery is needed. This heart mom stuff is hard. I plan on updating this blog and being very real and raw. I need an outlet. I feel like I have just been surviving through this, but not living. Some of this is a blur. Its felt as though the hard days were like years, never ending but here I am, 5 years into this journey, still surviving, still fighting, still hopeful, and still scared.

Please help me honor all the babies, children, and adults affected by CHD, the warriors and the angels by wearing red TODAY and every Friday in February.