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.