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!

16/12/2022

Sorry for the lack of posts the last week, things have been very busy! As you can see, Elliot has been up to all kinds of tricks and some treats and hanging with his elf pals as well.

Edward has been busy working out on the treadmill a lot with PT and playing a lot of Mario Kart with the nurses.

We’re just settling in for the holidays and missing being home with family.

THANK YOU so much to everyone who has been sending cards to Edward at the hospital! He gets so excited when they come deliver them 🥰 I can’t tell you how much it means to us!! We love you all!!

09/12/2022

07/12/2022

Yesterday was a very hectic day! Elliot setup his own photo booth and even had a box of props for us to use to take pictures with him 🤩 (Nurses are killing it this year with all the fun ideas for Elliot!)

After school yesterday, Edward and Ava got to Zoom with a country singer in Nashville, Troy Cartwright. It was so cool! He played one of his songs for them and asked them about Christmas. Such a cool experience!

During TR with Miss Mary, Edward made sugar cookies and gingerbread cookies. His OT for the day was decorating the cookies and then doing some weights afterwards. He used the 5lb. bar for the first time and did great with it!!

PT time yesterday he definitely made up from the day before. He had his 6 minute walk test again. He finally beat the goal of 1,000 feet in the 6 minutes, for the first time inside (he killed the goal when we were outside about a month ago and had no obstacles in our way)! It’s been hard to do when you have doctors rounding in the hallways and have to walk through them and then wait at every set of doors to badge in and out. I’m so proud of him!!

06/12/2022

Today was a rough and emotional day for Edward. As the holidays are approaching it gets harder and harder to be here, especially when we don’t know how much longer it’ll be 😔 I have faith that the right heart will come along when it’s meant to. But at the same time, I struggle even thinking about what that means for the family on the other end.

Elliot the Elf had a nice relaxing day tanning in his hammock with his bathing suit and shades on and a drink close by to sip 🏝

05/12/2022

Sunday Funday ended up being a lazy Sunday here. We slept in and Edward woke up looking all over for Elliot….he started to get upset because Elliot left a note saying that one of his friends was nearby so he went to visit her. He thought that Elliot didn’t want to be with him anymore 😔 We decided to go for a quick walk around the unit and he found Elliot hanging out in one of the Christmas trees by one of the nurses stations, and he was with his friend Snowflake, who happens to be the elf of Edward’s friend Amazing Ava, Heart Warrior 🥰

After a long nap during the day, the nurse let us know that his PICC dressing already needed to be changed again 😩 The dressing that they’re using now is more gentle on his irritated skin, but it doesn’t hold up as good as the previous kind. (We’re using IV3000 dressing now instead of CHG dressing) Later in the day yesterday he let us put a small no-no around his forearm to help hold his lumens because they’re so heavy and pull at all of the pants on the dressing. We’re hoping this will help the dressings last a little longer 🤞🏼

Tomorrow is a busy day, but hoping we can work on finishing our Christmas decorations 🎄

04/12/2022

A day late on posting this, but you know, life happens….

Elliot showed up yesterday morning wearing Hogwarts gear and had his broken foot fixed by the Skele-Gro potion! Woo hoo!! It was the talk of rounds 😂

Edward had to have his Picc line dressing changed first thing yesterday morning and have a new suture put in it 😳 We were all worried about how he was going to handle the suture part so we chose to go with trusty ole Versed. And, he did SO great!!

The rest of the day was spent napping and playing video games!