It's official. As of today our wait for a precious gift has started.
It's been a long past month. Noah has the heart cath which was an all day ordeal. They addressed a lot of collaterals to hopefully optimize his heart and buy him more time at home while we wait for his gift. The cath confirmed that his right ventricle function is bad...like bad bad and his tricuspid valve regurgitation is around 50 percent- also very bad. The combination of those two things- make for the candidacy of the Fontan unlikely.
While we knew this was the case, and we also were at peace not moving forward with a surgery that there wasn't a lot of confidence in that he would even make it through, the confirmation was difficult to come to terms with.
While we were still having insurance issues and having to deal with that, I took that time to reach out to Boston Childrens, CHOP, and TCH to get second, third and fourth opinions. They all had the same conclusion. Fontan wasn't an option and transplant it is.
During all of this, Noah began to show signs of viral infection and Brandon and I decided to take him in and ultimately he got admitted to the cardiac ICU. He tested positive for FIVE viruses. While his BNP was elevated, a bit of milrinone helped his heart a bit while trying to fight off all of the sicknesses. During this time in the hospital, we got the approval from insurance to move forward with transplant, and the chaos started there.
So many tests, ultrasounds on Noah, and a lot of meeting with people from each department of the transplant team to go over all of the risks, long term effects, financials, alll..of....the...things.
It was a lot. Even though B and I have sat through some of these when Noah was three months old and we started the transplant eval then, the overwhelming ness of it all, and that we have NO other choice was so much to come to terms with.
While many people that are not educated in the cardiac/medical world think this is a fix, it is far from it. Transplant comes with so many risks, from rejection to coronary artery disease, to cancer, and immune compromised. And the AVERAGE life span is about 10 years. This is a entirely new diagnosis that we have to learn about the meds, the signs to look out for, etc.
It has been a rush to get all of the check boxes marked and completed so that he can be listed, and now we wait. Today is day 1. He has been listed as a 1b while we wait at home. With all of these changes, we had to make the difficult decision to pull Elodie out of school to reduce the risk of viral exposure while Noah is listed. Any active infection or virus will move him to a 7 (inactive) on the list and a heart can not be accepted. We will be pretty strictly quarantined to try to keep him as healthy as possible and stay out of the hospital. This also led to me having to make the decision to not work again. The last few months things have felt so normal since I went back to work. We had a great routine, and the kids loved their schools. I have been really enjoying the work mom life. It was such a healthy distraction for me to put my mind to work and focus on something productive. I know this is just the stage we are in and this too shall pass. I am looking forward to spending more time with Noah and E and cherishing every moment we have while we wait.
Despite all of that, we are so thankful to be given this opportunity to give Noah more quality of life. We are thankful that in the midst of heartbreak and grief, a family is willing to donate life so we have more time with our boy. We know he is just not feeling well at all these days and it's been difficult to watch.
Thank you for all the prayers. And thank you to our friends and family that have lended a huge helping hand while Noah was in the hospital. We truly couldn't do it without you all.