Monthly Archives: June 2013

Ramblings of a Heart Mom

I have no answers, just a million questions.

We got the second opinion email today. I have learned to expect nothing. I was growing to accept that my son my live a life with a single ventricle heart. 

I sent his file via fed-ex 3 day shipping late the 14th. So it wasn’t going to ship till the 15th and it wouldnt arrive till the 19th. They told me to expect it to take two weeks to get a response. Its only the 24th and I got the email. 

Upon opening it I felt like I won the lottery. You know how you read in your head faster than  you do aloud? Well I was reading it aloud to Nick but was ahead of what was coming out of my mouth. I could barely get the words out. 

“After review of these studies, it is my opinion that a biventricular repair is indicated at this time. The catheterization shows a well functioning left ventricle with normal pressures.”

Did I just read what I thought I did? THAT SAYS ITS TRUE! My prayers are answered. My wishes are coming true. 

But wait….Boston is 2959 miles away. I googled that ish!

How am I going to do this?

Let me share another line of the email….

“I see no reason to delay this approach.”

Wait, wait, wait!!!

I was having to accept that surgery was happening way before than I thought, then I was having to accept that no it wasnt happening and the surgery we thought was happening wouldnt happen either, now I have to accept that it is indeed going to happen and its going to be thousands of miles away from home.

Im pregnant. 30 weeks. 10 weeks to go. 

I’m trying to figure out where to go from here.

First things first, I have to make sure that Carson’s medical insurance will cover him having this done in Boston. 

Then I have to figure out when is this surgery going to take place, when is the ideal time. You see Carson has had this hole between his ventricles that was basically so big his ventricles had almost no separation. Now, the hole is starting to get smaller. This changes the anatomy of his heart and eventually can change the pressures, which could potentially make things more difficult. Not only that, did I mention Im pregnant? So when is this going to take place and how the heck am I going to handle having a new born while my oldest is having open heart surgery? 

You know Carson was born via cesarean. Just because I had a cesarean with him does not mean that I have to have one again. However, not all hospitals or OBGYN’s will allow you to have a VBAC or vaginal birth after cesarean. I have had a hell of a time trying to find one that meets my needs and wants. I finally found a place in Los Angeles that allows VBACs however I have had a couple bad experiences. The final straw was a call from the health department saying that Carson and I had been exposed to TB while at one of my appointments. Im sick of fighting my insurance and doctors to find a truly VBAC supportive practice, so I decided to plan a home birth. I believe a womens body was made to do this. Babies are far smarter than we give them credit for and I believe that I can and will do this. One problem is that insurance does not cover homebirth. It’s something I have to pay for out of pocket. I have had half of my tax return put away, that is all the savings I have. Now I cannot justify paying out that much money when I know we are going to Boston. 

I feel like a rock in a hard place. 

Being a parent is about making sacrifices. How do I sacrifice one child over the other? How do I decide the birth I want vs Caron’s needs? How do I plan for something I dont have any answers for?

I dont know how long recovery will be for him, I dont know when surgery will be, I dont know how much money we are going to need to get to and from Boston, how long we will be there, where we will stay, how I will juggle Alison and Carson. I feel like I dont know anything.

I do know that this is the surgery that will give Carson the best quality of life, I do know that I will do whatever it takes to make this happen. I do know that things are in God’s hands. I do know that things will work out just the way they are supposed to. I do know that Alison chose  me, she chose us, she chose this family and she will love her brother through all of this just as much as we will. I do know that I have a super supportive, amazing family. I do know that this paragraph is longer than the I dont knows and I do know that for that I am grateful!

Please pray for us!!! Im sure all my questions will have answers eventually. Thank you everyone for your support and love! I know people want to know how they can help. Thank you! For now I need to make sure insurance will cover the surgery. After that I will share a fundraising page for anyone that wants to help. Thank you again! We love you all!! Your prayers are working, they have been, and they will continue to do so ❤

I’ve Been Avoiding This

Carson had his cath on May 31st. It went well, he handled it really well but the news it gave us is not anything we were expecting.

Ever since Carson was diagnosed all of the doctors would always comment on how lucky he is to have two solid ventricles.  That it was just a matter of time to get him big enough to be able to have his “full repair” that would give him a normal functioning heart.

Once again, Carson is writing his own story, and making his own rules.

He is not a candidate for the “bi-vent” repair that was planned. When they do the bi-vent they put artificial conduit in his heart to create a pulmonary artery, then they would patch his VSD (or hole between his ventricles) and reverse the Glenn. Apparently his original pulmonary artery (which they used to build him an aorta) is not in an ideal place and would make it too difficult and risky to patch his heart how they would need to. Another thing that is against him is that his, prior HUGE VSD is now starting to close on its own and that causes more challenges in doing the Bi-Vent repair. So Carson’s surgeon thinks the Fontan is the best route to go for him.

Here is a lesson in anatomy. Blood from the body (unoxygenated) usually goes to the right side of the heart, out to the lungs (becomes oxygenated) back into the left side of the heart and out through the aorta to the body.

When Carson had his Glenn (his second surgery) they re-routed the blood that drains from above his heart to go straight to the lungs instead. This causes that blood to get 100% oxygenated since it isnt mixing in his heart first. Because babies body proportions are different than adults this works for them for a 2-3 years. Most kids who get Glenn’s get the third surgery in the series of Norwood, Glenn, and then the Fontan. What the Fontan will do is it will take the blood from the lower half of the body and re-route it to the lungs first so that it gets 100% oxygenation before going to the heart.

This is great, we want his oxygen levels as high as possible. However, the heart was not built for these kind of pressures. The left side and right side of the heart are very different. They are created to do very different things. The right side is for low oxygen levels, and the left is for 100% oxygenation. What this means is eventually his heart can grow tired. Eventually he can be placed on a transplant list.

The series of Norwood, Glenn, and Fontan are not that old. The oldest “Fontan patients” are in their 30’s or 40’s. Im not super educated in the Fontan because I never ever thought Carson would have that surgery instead. Its hard to swallow. A bi-vent would give him a normal functioning heart. It would give him a better life expectancy.

This series of surgeries was originally created for kids with the diagnosis of Hypoplastic Left Heart Syndrome or HLHS. Basically this means that a kid diagnosed with HLHS only has half of their heart.

Boston is the #1 Children’s Hospital, they also happen to be the #1 hospital in children’s cardiac care. Boston is taking kids who are born with very small left ventricles and they are rehabilitating them, making them grow, and then they are doing Bi-Vent repairs on these kids, who were only born with half a heart, and giving them a shot at living a full life.

I’ve always fought for Carson and I wont stop. I sent Carson’s information to Boston to get their opinion on his third surgery. I want him to have a fullest life possible. The Fontan is not a death sentence. The Fontan has allowed kids to live normally, and without it many kids would not be here today. I just need to know that the best of the best either thinks the Fontan is best as well, or even better thinks the Bi-Vent is indeed possible.

Being a heart mom means rolling with the punches. I feel like I got sucker punched. But Im back on my feet, and Im coming out swinging. I’m getting more educated, and Ill never give up.