Edward’s Heart Journey

10/06/2023

Hello everyone!

I am so excited to announce that after 359 days, we are finally back home 🥹 I wanna thank our family who has done so much and worked so hard to make sure that everything was ready for us to come home.

Leaving Indy was a little bittersweet, because while we are so happy to be home, we will miss a lot of the people that we’ve grown so close to this past year. (Good thing we’ll be back down there for frequent visits)

I can’t wait to take the next couple weeks to get acclimated to our new normal and figure out the right schedule that’s going to work for everything that Edward will need. I’m so excited to see this boy grow and flourish more at home over this summer! We still will be homebodies for a while, trying to keep Edward safe and healthy.

Thank you to EVERY SINGLE PERSON for all the love and support we have received over the past year!! We are forever grateful 🥰

09/05/2023

On Day 327 we got to walk out of Riley Children’s Hospital together!! 😭 Thank you to everyone at Riley for all the love and support over the past 11 months! We’ll be back to visit!!

Edward Sandefur, 11, was treated to a fun farewell from his caregivers this week. He had been a Riley patient for more than 300 days while waiting for a heart transplant, which he recently received. He now heads to the Riley Ronald McDonald House to continue his recovery.

08/05/2023

Boy oh boy…the past 3 weeks have been absolutely crazy! We moved back to the step down unit 5 days after Edward’s transplant surgery!!

We’ve had to stay a little longer than what was originally planned bc of a minor setback. One of his chest tubes from surgery had been placed into one of the cannula sites from his Berlin Heart, and when the chest tubes were taken out that one spot was having a lot of drainage. The next day he ended up with a wound vac to try and help with the healing process. It was so back and forth on whether the wound vac would stay on for several weeks or if we would just switch to packing the site and putting a dressing over it. On Friday, one of the other surgeons came to look at the wound, along with the wound team and the transplant team, and the decision would be to just keep the wound vac off and so packing and a dressing. That was really good news to hear!

Tomorrow morning the wound team is coming by again to watch me do the packing and dressing this time and if everything goes well we might get to leave as early as tomorrow afternoon! I’m just praying that his recovery keeps going well, whether we leave or not.

We have started saying our goodbyes to the nurses and other staff here, who have become our family too. It’s very bittersweet bc I am so excited to be able to walk out of this hospital with my boy finally, but I will miss the conversations and every day interactions with these beautiful souls.

When we do get to leave, Edward will be doing rehab at COLTT down here in Indy for awhile, so we will be staying in an apartment for at least a month.

Thank you so much to everyone for your continued support and prayers over this past year! You are all very appreciated!

05/05/2023

After more than 300 days at Riley, 11-year-old Edward Sandefur receives his hero heart.

17/04/2023

This boy is just so amazing!! Late Saturday night, after his transplant surgery, he was already talking over his breathing tube and telling me to turn the tv on and go wash his blankies haha.

So, first thing yesterday morning they extubated him and he’s doing great! He’s only using 1 liter nasal cannula right now. He’s also been drinking and eating a lot of popsicles. This morning he was able to eat some cereal and have milk also.

PT will come by this afternoon so we can get him up and moving today. I’ll let you know how the rest of the day goes later tonight.

(Pic is right after he was extubated yesterday morning)

16/04/2023

It’s been a while since an update, so this will be the best one yet….on Day 304, here at Riley Children’s Hospital, Edward received the most precious gift ever….a NEW HEART ♥️!!!

Everyone said the surgery went great, there were no complications and minimal bleeding. He will have to be on a ventilator for a few days probably. Right now I’m just taking everything one day at a time, hour by hour.

The CVICU nurses are getting him cleaned up and tucked in before I’ll be able to go into the room and see him.

The last 36 hours have been a whirlwind of emotions for us and he was very scared and nervous of the surgery. But he rocked it!!

Thank you everyone for your thoughts and prayers through this very long and very difficult journey. We are now moving on from the last chapter and starting a new one.

I don’t take this precious gift lightly. It actually makes me feel ill just to think about it, but I feel guilt for being so happy. I feel horrible for the mother that said goodbye to her child for the last time and we were celebrating. I just want that family to know how extremely grateful I am for their selfless gift of this most precious heart! I will do everything in my power to make sure that it’s well taken care of.

I’ll update more later after I get to go in and see Edward. (The picture is from this morning before heading down to the OR)

20/02/2023

An Indianapolis doctor was the first to use a Berlin heart in the state and he's credited with helping pave the way for the small life-saving machine's use across the country.

20/02/2023

It’s been a long time since I’ve posted an update on Edward. But first, I want to say THANK YOU to everyone for everything and all of the love that Edward (and I) received around the holidays!! He was so spoiled and he loved every single card and gift 😁

Since my last post, Edward had to go down to the OR and have 5 teeth pulled because a couple were causing a lot of bleeding in his mouth. He did great and the tooth fairy paid him a visit for the third time since we’ve been here.

Last week he got a new PICC line placed in his left arm because the old one had been in his right arm for 8 months. He now finally has his whole right arm free!!

We also celebrated Edward’s 11th Birthday last Thursday!! It was such a great day and he had a great time celebrating with grandma and all the nurses!

Aunt Kelsey came to visit over the weekend so we got to celebrate her birthday as well (it was last Wednesday). While she was here she was even able to give Edward a haircut, finally 😁

24/12/2022

Finally finished the Holiday Lego Village and window decorating today. Cutting it a little close, but we had to move rooms earlier this week, so everything’s been a mess!