Day 17

Day 17, really more of the same. Little emotional ups and downs throughout the day, depending upon a doctor's opinion or a blood gas reading. Erin had a good day yesterday, and we managed to get through last night without any more sneak puking attacks.

Overnight, we learned that her lactate level in her blood gas had risen to 3.1, which is not good. Typically, the doctors like the lactate level to be 1 or less. The night before, it was 1.9 (acceptable but needing to be watched) and then 1.1. Lactate levels are another indicator as to whether her cells are getting enough oxygen from her blood. Neonatologist Robin Steinhorn thought that the elevated lactate level might have come as the result of doing the blood draw by sticking Erin in the heel, a rather painful procedure. The blood gases are more accurate by taking them from per picc line, and she ordered another one, as well as ordering a cessation on future heel sticks. The resulting lactate level was down to 1.6, which everyone felt much better about. This is just an example of how you live and die with little readings and results. By the end of the day, you are exhausted.

Erin had yet another echo cardiogram this morning to see how her heart is doing. The preliminary results seemed good, although we need a doctor to read and interpret them. I watched the monitor showing her beating heart, and it struck me that I was watching the organ that keeps my daughter alive. It is definitely a different take when you view it that way. She did great throughout the echo, courtesy of her beloved Sweeties, capably applied by Sheila.

The agenda for the balance of the day is lunch, more holding and feeding coupled with several diaper changes, a quick dinner, more holding and feeding again with diaper changes, and then to bed. Oh yeah...that has been the schedule every day for the past 2 1/2 weeks.