A Thank You Letter to the PICU Doctor Who Broke Her Promise

You remember my Tyler. I can’t imagine how you could forget him, or me. It was Super Bowl Sunday 2015. It was snowing. We were in our second week post-brain tumor resection where Tyler lost function of his pituitary gland. The diabetes insipidus was sending his little body’s sodium levels all over the place. When his sodium level was too low, he was lethargic, confused and even seized a few times.

The first two seizures were traumatic. I learned quickly how to read the signs and symptoms of a declining sodium level in Tyler. When I returned this day in February after a quick visit home with my daughters, you came to me with a plan.

“We are going to try not to intervene as quickly today to raise or lower his sodium levels because his body needs to learn how to do it on its own.”

I knew already that he felt best when his levels were around 130-135. The seizures happened when he went into the lower 120s. When I expressed my concern, you promised that if his sodium level went below 124, you would intervene to prevent another seizure.

An hour passed and the symptoms of a declining sodium level presented themselves.  Tyler was barely able to sit up, keep his eyes open or talk to me. The nurse checked his sodium level every half hour, and it was dropping. She called you. No answer. We waited a little longer. Sodium level was at 126, and symptoms were worsening. She paged you. No response. We waited again, trying to make Tyler as comfortable as possible. Fifteen minutes passed, and the sodium level came back at 124. She paged you one last time before his body began to stiffen and his eyes fixated on the ceiling. She waved oxygen under his nose in hopes of bringing him out of the seizure like the two times before. His jaw only clenched harder and his limbs started to twitch.

Other nurses and respiratory therapists rushed in. You were still not there. Five minutes into the seizure… five minutes… you came rushing in to save the day. Pumped him full of Ativan to stop the seizure and stuck a tube down his throat because he was deprived of oxygen. After seven minutes, the seizure began to let up. I watched helplessly as my baby lie there intubated, almost lifeless, from something you promised to prevent. Your only explanation to me was you were “on a call with another physician.”

At the time and for several months following, I had feelings for you I had never experienced. Hate. True and deep hate. There are lots of things in this situation no one has control over. But this one thing? We did have control over it. And you were on a call with another physician. While my baby was fighting for breath.

But now, a year and a half later, I look back and realize I should actually thank you.  I thank you for opening my eyes. Before those seven minutes in the PICU with you, I was afraid to ask questions. I was afraid to demand what my son needed. I was afraid to trust my gut, maternal instincts, always thinking the doctors knew better.

So, thank you.

You made me a warrior, tirelessly advocating for my son day in and day out. I will never stop researching and asking questions and demanding his needs be met in the best possible way. Thank you for breaking your promise.

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