ACPA Family Services

Cleft-Craniofacial Community Stories

Jeana Sue Storey

Click here for the story in PDF format.

Jeana Sue Storey’s Second Palate Reconstruction – November 26, 2007

CPF’s November 2008 Story of the Month, Jeana Sue Storey
Jeana Sue Storey – October 19, 2008

Jeana’s morning started when we arrived at St. Louis Children’s Hospital at 6 a.m. She was introduced to all the friendly and compassionate nurses who work in the pre-surgery area and saw all the doctors that would be in the operating room with her including her plastic surgeon,ENT, anesthesiologist, and several nurses. Jeana was encouraged to ask any and all questions, as were we, her parents. She had a television, games and books to keep her busy until it was her turn to be “The Star.” As with most Children’s Hospitals, she didn’t deal with IV’s until after she was asleep – she only had to drink a small amount of medicine that was to relax her, but it actually caused her to fall sound asleep. She was snoring within 20 minutes!

CPF’s November 2008 Story of the Month, Jeana Sue Storey
The morning of Jeana’s surgery

The reconstruction was supposed to take between 2 and 4 ½ hours. We were shown to a room with couches, a TV and a phone. The group of doctors and nurses called from the operating room every 45 minutes to update us on Jeana’s status and to answer our questions and concerns. The entire procedure only took a little under 3 hours and her plastic surgeon was genuinely amazed by how smooth and perfectly it went. The operation also included placing in Jeana’s ears her tenth set of tubes. An incision was made in the roof of her mouth, and skin from the back of Jeana’s throat was used for a skin graft. The purpose of the surgery was to lengthen her palate so that her articulation of hard sounds like /t/ and /k/ would be easier for her.

CPF’s November 2008 Story of the Month, Jeana Sue Storey
One hour after surgery

The biggest surprise came when we actually saw Jeana. I admit that at first, I panicked. Her whole face was quite swollen, but I found out that swelling is completely normal! To have her mouth completely reconfigured and expanded was obviously going to cause swelling and a slight amount of bruising, but as a mom, I felt like I was in Panic City! To Jeana’s credit, she tried her best to smile when she saw me, and that was when I knew everything would be fine.

CPF’s November 2008 Story of the Month, Jeana Sue Storey
Playing with the train set

So on to the fun part! There are a lot of neat surprises and excitement for kids who undergo surgery. All hospitals are different, but at Children’s Jeana was surprised by a volunteer and her puppy who come to her room to see if they could make her smile. It worked! Jeana loves animals, so she was very happy to see the puppy! When she felt like getting out of bed and walking, we went to the hospital’s playroom. There she painted pictures and put puzzles together. She played with board games and with the train set. A firefighter also visited and let Jeana try on his helmet and jacket. There was so much to do, Jeana was worn out! Eventually she went back to her room and took a long, warm bubble bath and had a good nap.

CPF’s November 2008 Story of the Month, Jeana Sue Storey
Playing video games

When Jeana woke up she ate lots of ice cream! The nurses let her have any soft food – ice cream, pudding, broth, popsicles, soda, Jello – that she wanted, at any time she wanted! It did take Jeana a while to eat and drink, and she could only have food and liquid in tiny amounts. I thought she would stay there forever! They also had portable Playstations and Nintendos. We had to remind Jeana that her mouth was very delicate and needed extra care, so she couldn’t eat or drink anything hard, crunchy, or with sharp edges for 6 weeks.

CPF’s November 2008 Story of the Month, Jeana Sue Storey
Going home!

The second day in the hospital, Jeana told me she wanted to go home. Sure enough, when the doctor came and looked at her mouth, he said she was doing great! We loaded all her stuff and Miss Jeana into a wagon and we were on our way home! She loved not having to walk all the way to the car. Plus all of her things were right there with her. The nurses made a huge deal as she was leaving, which made her feel great!

CPF’s November 2008 Story of the Month, Jeana Sue Storey
Jeana’s REAL smile!

At home, Jeana decided she didn’t like the pain medicine, and wouldn’t take it. The extreme tenderness of her month caused her not to want to eat or drink. In the end, she toughed it out and within 4 days had friends at the house playing, running and jumping again! Jeana is most definitely our hero and one tough cookie! We’re waiting to hear a date for Jeana’s 3rd reconstruction. She’s not scared and says things like, “Mom, I just want to be like all of my friends – to be able to talk normally. So if this is what I have to do, then I’ll do it.”THAT is a determined kid!

May the Lord bless and keep everyone safe, happy and healthy! Thank you for letting us share our story with you!

Last Updated: Oct 31, 2008