Pexy for Payson

Pexy for Payson

Thanks again for everyone’s love and support as you continue to follow Payson’s journey with us.

It has come to a time where PCH has hit their roadblock with Payson’s care needs. Unfortunately, still zero answers as to the root cause of any and all of ~tHiS~. Because of this, we have been forced to seek out second opinions for her care. Her complex condition includes chronic lung disease, causing her lower lobes to turn fibrotic, in shortened terms, and is requiring surgical intervention not offered in Arizona. Boston and Florida have been strongly recommended. Upon further research and speaking with other medical families, we have found a pediatric surgeon specifically hired in San Diego to perform this recommended procedure! He has completed his fellowship with the #1 surgeons currently performing this on the East Coast.

We are interested in West Coast care for the most obvious reason, cost. Again, unfortunately, this is the reason for this GoFundMe. Not all of the travel costs and medical costs are covered by insurance. The breakdown will consist of an initial in-person consult, including another double scope followed by the procedure, including roughly a 2-week inpatient stay with chest tubes. This date is in the middle of August.

What is a pexy, you ask? Pexy is a “medical suffix that means 'fixation' or 'surgical fixation.' It is used in various medical terms to indicate a surgical procedure where an organ or tissue is fixed in place.”

What surgery are they suggesting? The tracheopexy “is a surgical procedure used to open and support the airway (windpipe) in severe tracheomalacia. (Her condition also includes bronchomalacia). In this procedure, a surgeon secures either the back wall of the windpipe to a strong ligament on top of the spine (posterior tracheopexy) or the front of the trachea to the breastbone/sternum (anterior tracheopexy). This prevents the trachea from collapsing. Air can then flow freely through the open airway.

Tracheopexy is a lasting solution for severe tracheomalacia. It is used to help children with severe collapse of the windpipe within the chest. The decision to recommend tracheopexy is made after all medical therapies have been tried and a child has been evaluated to determine the degree of tracheomalacia. The benefits of the tracheopexy procedure can be significant. Studies have shown that posterior tracheopexy can effectively ease respiratory symptoms and lessen the degree of airway collapse in patients with severe tracheomalacia. This leads to fewer respiratory tract infections. In some cases, the procedure has allowed children to breathe freely and avoid the need for a tracheostomy, leading to a better quality of life.

The procedure does have risks. The tracheopexy surgery occurs near very important structures in the chest, including the heart, major blood vessels, windpipe, and food pipe (esophagus). Because posterior tracheopexy moves the food pipe, a child may experience difficulty swallowing or dysphagia after surgery.”

We would greatly appreciate any donations to help offset gas, food, housing, medical bills, and such as we will be spending much of August in San Diego. This will be vital for her future to continue to allow her to live her most fulfilling, comfortable life and give her back some normalcy!