Tori's Surgery Fund

When Tori was born she had what we were told was a busted blood vessel on the left side of her face. We were told it was from when I had an ECV done and her face got pushed into my ribs, and that it would heal itself and go away. Over the next few months this "busted vessel" grew and developed into a large patch of red spots over the left side of her face and neck and also her lip. This busted blood vessel had revealed itself as what is called a Hemangioma. Early in October Tori developed this wheezing sound when she was breathing and then a barking cough. We took her to the ER several times and she was diagnosed with croup and given steroids. Her wheezing and cough improved close to the end of October but she began coughing up blood. We returned to the ER and were seen by Dr. William Moretz, ENT. He scheduled us to come in for a laryngoscopy, during which he found that this Hemangioma that was on her face was also inside of her throat and was occluding her airway. We immediately decided that having a Tracheostomy tube put in was our best option, so that she could have a stable airway while we decided on the best treatment for the Hemangioma. On November 1, 2010, just 3 days after her laryngoscopy, she had her Tracheostomy tube put in. After 5 days in the PICU and 2 days in the PSU at Memorial, with a very quick but thorough education about tracheostomy tubes we were sent home with a ton of medical equipment and an in home nurse!! In December we went to see a dermatologist in Atlanta, Dr. Spraker. She told us about this new treatment for Hemangiomas in which they use a high blood pressure medicine to reduce the hemangiomas size and color. We were hesitant but decided to go through with it. Tori was admitted to the Egleston Childrens Hospital, but because she was diagnosed with RSV she was unable to start the treatment. She was sent home on oxygen and more steroids and we rescheduled to start the treatment. At the beginning of February we went back but decided to hold off on the treatment and see how the hemangioma reacted when she came off of the steriods. By the beginning of March it had tripled in size and we decided that it was time to start the treatment. So back to Atlanta we went and were admitted to Egleston again and this time successfully started the treatment. We saw a noticeable difference in size and color in ONE DAY!!! After a few days in the hospital being closely monitored, and making all the nurses fall in love with her, we got to go home!! The difference just got more and more noticeable week by week. Now here we are 4 years later and Tori is doing so well! She had her tracheostomy tube removed on November 1 2012, exactly 2 years to the day from when she had it put in. The only noticeable hemangioma that she has now is on her bottom lip. She is being weaned off of her medicine and will be off of it completely when we go back to Atlanta in April. When we return to Atlanta we will be consulting with Dr. Spraker about Tori having surgery to remove the rest of the hemangioma on her lip. All of Tori’s medical bills are covered but the cost of hotels, food, gas and rental cars have really been hard for us to cover. When Tori has her surgery we will need to be in Atlanta for about a week. This means that my husband will have to miss a week of work We are asking for donations to cover all of the gas, food, and hotel expenses. Any contribution, no matter the size, and all prayers are greatly appreciated.
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Organizer

Jimi Bell 
Organizer
Rincon, GA
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