3/3/2011 86 Days Old

On the 86th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Our first day both getting ready for work at the same time went well. We were able to take care of Maya, and both of us even got to work on time. The late night last night was not as smooth. I was able to get Maya to bed early last night. She was asleep in her bed by 10:30. After a few minutes in bed we noticed that her oxygen level was really low. It was almost low enough to sound her alarm, but she was sleeping peacefully. Normally when she de-sats she is irritable or crying, and we can see what is causing her to struggle. Last night was so scary because she was just resting. She wasn’t crying or squirming or getting ready to fill a diaper. After several minutes at a low oxygen level she began to climb back up. It was like she had an apnea, except for the fact that she was still breathing. We don’t know what to make of it other than the same thing that used to cause her apneas is now causing her de-sats. She recovered from her episode and had a peaceful night. When I awoke this morning she was happy as could be nestled in her bed. Her oxygen level was normal.

While I was at work today Grandma Kathy came by to take care of Maya. When I got home Maya’s nurse was here. She had just changed Maya’s feeding tube. Maya was resting. It always wears her out when we replace her tube. I talked with the nurse about Maya’s episode last night and about what she had heard in Maya’s lungs today. It seems that the crackle in Maya’s lungs has gotten worse. I didn’t have the courage to ask what that meant. We have been through so many ups and downs over the last 86 days that I have learned that looking for answers is not always the best use of my energy. So we talked about things that we could do for Maya when she de-sats, and we now have some comfort measures that we can use when Maya is struggling. That is what really matters. We need to adapt as Maya changes. We need to do as our social worker says ” aggressively treat for comfort.”

Tonight has been good. Maya is resting after her difficult day, and Erin is holding her after her difficult day. I am proud of them both.

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