Hayden will never be “fixed” but he is doing well. He is currently in 1st grade and was able to play soccer in the fall. He loves pickles and salads. He is on 3 daily medications and stays active.
In January Hayden started getting sick, he was diagnosed with pneumonia. After being hospitalized he continued to struggle with the symptoms for months. In June he coughed up something that was very concerning and was diagnosed with Plastic Bronchitis.
In July we went in for a Cath to hopefully help get the casts under control. It didn't help and he ended up going home on oxygen and more meds.
In Sept our Dr reached out to CHOP in Philly with it being the only place in the country to help with this. We are scheduled to go under the procedure on Oct 18th leaving behind our 11 yr old and hoping for the best. Our length of stay could be 2 weeks or could be more.
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