A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

8:25 PM

Thursday

We spent a lot of time today working on getting the right people involved in Sam's care plan, calling in favors from our friends at CSI and leveraging some of the best nurses on the face of the earth.

It was, again, a day of high highs and low lows. Our clinic doc always comes in the morning when he's doing well; then when he struggles later in the day it's just Esther and the nurses pushing him through.

Today Sam and his mom hosted multiple new doctors and Sam's blood was distributed to labs for testing, trying to determine the cause of the pneumonia and why it was not getting better.

Today we installed IV number two, this one in his left foot.

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