An overdue update

Today lincoln had a cardiology appointment at CHOP. It was scheduled for April 1st but got pushed back due to all of the COVID-19 madness.

His last appointment (3 months ago) we discovered the Porcine valve that was placed at the Mayo Clinic 2 years ago is starting to wear out. That’s making the blood regurgitate up into the right atrium which is not good. His surgeon is super cautious and said he wanted to give Lincoln a few months then we could make a decision whether or not to have surgery yet. Lincoln is only 5 years old and this would be his 3rd surgery on his heart. My biggest fear is to run out of options one day so we have to be very thoughtful about surgery. A person can’t just keep having open heart surgeries. I trust his surgeon at Mayo and I trust our team at CHOP. We have to stay positive.

The other day we took a drive just to get out

of the house for a minute and I heard lincoln tell Luna “Luna I got the bad news” which he usually follows with something silly but he threw me for a loop. He said “ when people get older,they die.” Right away with tears streaming Luna said “MOM?!?” He told her “yes” and she asked “ me too?!!!” His answer was so confident. He told her kids don’t die and she shouldn’t worry about that. This was a 20

second conversation than switched to favorite rides in Disney and video games but I couldn’t help but think how thankful I’d be if my kids got to outlive me and if kids really didn’t die. Scott and I are very honest with the kids but I needed to just let them believe what lincoln said because what a nice world to be in. One where parents grow old and kids don’t die.

Unfortunately on Lincoln’s echo this morning they discovered what they believe is a clot inside his heart. We’re obviously afraid the clot will mobilize so we need to take action. Tomorrow Lincoln will be tested for COVID-19 (just policy) and Friday morning he’ll have a TEE ( trans esophageal echocardiogram) under cardiac anesthesia to see if there is in-fact a clot. This could have just been artifact on the echo, maybe Im just being naive but Im hopefully it’s a false reading. The procedure shouldn’t take long and we’ll get the answers we need. Im already looking forward to It being over.

Lincoln takes It all in stride. We will tell him tomorrow so he isn’t worrying too much. Today at his appointment he said “enough is enough!” And he’s not wrong! Enough IS enough Lincoln. We are grateful for every single day with these kiddos even during these crazy Covid-19 quarantine days! Hoping to follow up with some good news soon. Please send your positive love and light Lincoln’s way this week.

-Jen xo