Emma Kate's Open Heart Surgery

07/03 Update - Our second flight to Cincinatti, Ohio was a success. Emma had the Fontan surgery today. Everything went great and she will be in the hospital for several weeks recovering.

05/22 Update - Emma tested positive for Rhinovirus, so surgery has been postponed for 6 weeks.

We fly to Cincinatti, Ohio May 19th with Emma. They don’t want Emma in her car seat from Ohio to Florida after surgery, so we are flying.

Emma will go to Cincinatti Children’s on May 20th for a heart cath and MRI. If she’s approved for the Fontan surgery, it will be on May 22nd.

For those who don’t know our sweet Emma, she was born without the two chambers in the right side of her heart. She has right heart hypoplastic syndrome with pulmonary atresia and intact ventricular septum. She has a coronary fistulas stemming off her right pulmonary artery. She had the Glenn open-heart surgery on 03/10/2023 but needs another life-saving surgery. She operates with her oxygen in the 70’s. The Fontan surgery is the last of the palliative surgeries that should help bring Emma’s oxygen to 85-95%. We keep her mostly in a bubble because she gets sick so easy and it hits her hard, so we’re are hopeful for her having the surgery and getting to do more. She loves to walk around the neighborhood, but normally runs out of breath before she makes it from our house to the road.

We are unsure of how long we will be gone and could use the money for food (Our hotel room doesn’t have a kitchen, so we will be eating out a lot.) and other expenses while we are gone. We hate asking for help but we are surviving on one income because we can’t put Emma in just a regular daycare and there are no medical daycares around us. We applied for the Ronald McDonald House a month ago but there is a wait, so we will be in a hotel until they get an opening. We will have to Uber back and forth from the hotel to the hospital.

Seeing Emma almost perfect and her scars healed from her prior open-heart surgery, minus her oxygen staying in the 70’s, makes us fear another surgery forthcoming. We know it has to happen, but all we can do is pray and trust in God’s will.

Pray with us that Emma’s heart pressures will be good and that she can have the Fontan open-heart surgery. If her heart pressures are not where they need to be, she’ll have to be listed for transplant. We are hoping and praying she doesn’t have to have a transplant for a long time. A transplant is not a cure,

unfortunately.

If you prefer Venmo or cash app, our Venmo is @Emily-Pettis and our cash app is $estewpettis.