When our youngest daughter, Francesca, was hospitalized at Seattle Children’s for a stubborn pneumonia, what was supposed to last two days turned into two of the scariest months of our lives.
It quickly became clear that pneumonia wasn’t Frankie’s biggest health issue.
We spent our days in conferences with dozens of specialists trying to crack the code of her mysterious illness. They treated us as equals, saying “you know Frankie best.”
Our lowest point came when Frankie spent her 11th birthday in a drug-induced coma, so that a machine could take over the work of her lungs. We lived in constant terror that she would slip away from us forever.
We were in such a vulnerable position. Participating in the conferences and assisting the nurses in Frankie’s bedside care kept us sane. Being on the team was our lifeline; without it, we would have lived at the hospital in complete helplessness and desperation.
Looking back, I realize just how many things we got at Children’s that we didn’t even know we needed. The most important thing was being involved – a therapy as critical for us as the medication being pumped into our daughter’s body.
We experienced the worst days of our lives at Children’s, but also the best. Our team finally nailed the diagnosis – a very rare but treatable autoimmune condition that occurs in one out of every one million kids.
We always knew Frankie was one in a million. What we learned is that Children’s is one in a million, too.
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