Mackenzie’s Story

Site created on August 6, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Shannon Dodd

Just got the call from CHOP as all of the results that we have been patiently waiting for are finally in. We can confidently say that the 2 main issues that Mackenzie has are severe Tracheomalacia and very bad acid reflux. We are thankful that those are the only 2 issues to contend with and that we have successfully ruled out any auto-immune disorders, genetic mutations and all biopsies are clear. They found that she produced an incredibly high amount of acid and started her on a new medication that she takes 3 times a day. They are also keeping her on the medication to work to keep the airway strengthened. For now, we wait out the winter and see how many times she gets sick. If they find that she is getting sick too often, the plan will be to put her on a low dose of antibiotics for the winter to get her through the tough times and help keep the germs at bay. The Airway Team stated that they have not seen many children (2 to be exact) with such a severe case of tracheomalacia. However, the corrective surgery that can be done is only done at Boston Children's Hospital. The surgery is new and hasn't been around for very long. The plan for now is to see how the winter goes and buy us some time before going to Boston. I'm comfortable with this plan for now and hope that she has an easy winter with relatively few illnesses. We have already been through 2 rounds of antibiotics so far this winter. We can say at this point that we know the exact issues and have ruled every other thing out. She went through so much at CHOP and we are happy that part of things is over and done with. It almost seems surreal that we finally have our answers. Now we work to manage symptoms when she does get sick. We have a new machine that she uses that forces the back of the airway open and will hopefully continue to provide her small bouts of relief when she does get sick. Fingers crossed that we have a good winter with few illnesses. Tonight I will be breathing a little deeper and will be thankful for the knowledge and plan that we have now as we move forward and wait for Boston to gai.
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