Tuesday, May 26, 2015


This was going to be Jacob's last week of 2nd grade before summer break. Lots of fun activities planned in school, but Jacob had other plans this morning. He woke up with a heart rate of 170 (!) and lots of secretions. I knew immediately he had to be seen. In the back of my mind, I was also thinking about Sarah's cold over the weekend. Maybe it was Jacob's turn to come down with a respiratory virus? He also had been off all of last week. Something wasn't right.

Special Care Clinic was full, so we had to head straight to the Emergency Room. Jacob's lactate is quite elevated today, which would indicate sepsis. He also has pneumonia. It makes me a little sad. We have had the longest ever track record of no pneumonia. I think we're hitting two years just about now.

Over the last year, we have taken Jacob in for adrenaline insufficiency and colitis. Today, it looks like we're dealing with a mitochondrial crash. Jacob got so sick so very quickly, and he is actually spiking a fever. I can't remember when that happened last. Heart rate is still very high, and the team is monitoring his blood pressures closely. The big gun antibiotics are on board, and most medications are IV. Labs are drawn every four hours.

We hope Jacob will turn a corner quickly, so we can start enjoying the summer (despite it still being rainy & chilly here)!

Love, Maria.

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