Isabelle

Our sweet Isabelle is almost 3 and was a happy, pretty healthy, smart, caring, goofy girl. She loves coloring, being with friends, sports, and reading. As some of you know it’s been a trying couple of months with our daughter Isabelle. Starting back in April she had a three day admission for stridor/croup. She required multiple doses of emergency medications to help open her airway and stabilize her breathing. Not even a month later we are back again with another three day stay at Children’s with the same stridor/croup requiring more emergency meds, but this time Isabelle is much more distressed and really having a hard time bouncing back. Then again in June back in the ER again with an emergency respiratory distress situation filled with more emergency meds and another couple day stay. We were finally blessed enough to have a new group of doctors dig further to why our sweet girl kept getting so so sick.

In July Isabelle was diagnosed with complete tracheal rings with reactive airway disease cause unknown. Complete tracheal rings is usually diagnosed in infants and essentially it’s very rare to be diagnosed so late in life. Essentially Isabelle airway is half the size it should be and very stiff and not flexible. This is causing her to essentially grow out of her airway and is leading to respiratory attacks, over working to breath, and frequent airway infections. The littlest irritant, cold, or viral infection can land Isabelle in the hospital in respiratory distress due to this. This diagnosis is a rare and complicated course to treat with the only solution being a very invasive surgery called a slide tracheoplasty. Essentially, they will open up her airway and slide her trachea up to give her trachea the flexibility and width to help Isabelle breath easier and allow her airway to grow with her. For this surgery it requires multiple doctors for a disciplinary approach. With the rarity not a lot of doctors can or have done this surgery or dealt with this condition. That being said, we found a great ground of doctors at Childrens in Boston. They have agreed to take her case and will do a surgery in November. The surgery course is a week of testing prior and then a week or two in the ICU. She will have to be intubated and on cardiopulmonary bypass during surgery to reroute her pulmonary artery as well as fix her trachea.

Its been a challenge not only to get her the best care, but also manage both our jobs with unfortunate amount of call out, pto use, and rerouting work schedules to accommodate the many doctor appointments she is requiring as well as the frequent ER/admissions she has been enduring.

we are asking for prayers for our sweet girl for this to be the catch all solution to get her happy and healthy again, but we are also asking for any contributions to help ease the medical costs, travel costs, and 6-8 weeks of recovery costs.

In advance, thank you for all your support and love you’ve shown us. We are so grateful for great family, friends, coworkers, and employers who really have surrounded us in so much love and support in such an emotional time.

thank you again with our whole hearts,

The Tomasic’s