This post was originally posted on my Fridays With Lorelei Facebook page along with several other updates. Tune in there for additional updates.
I thought NICU life was hard. I am honestly thinking that PICU life has it beat. Today was yet another roller coaster after a tough night. We lost another PICU neighbor and Lorelei’s vitals were all over the place. Early in the morning I was startled awake by a resident telling me that Lorelei’s heart rate was dropping and her blood pressure was too high. We sat on pins and needles all day. She would rebound and then labs would set us back again.
Today, in the midst of the crazy, I ran into the attending doctor we had last week. Earlier that morning she had made me promise I would leave the hospital at some point, which of course I did not do. She looked at me and said, quite matter-of-factly, “Wanna go for a walk?” Surprised, I said sure, assuming she meant around the hospital. Next thing I know we are getting in her car and driving ten minutes from the hospital, to walk around a quiet Floridian lake, surrounded by beautiful trees. Away from the hospital. Away from the crazy.
From our first encounter, I have respected her honesty. On the day that Lorelei crashed and had to be intubated I was looking at her as I sobbed, while making life and death decisions. In that moment she was to-the-point, but empathized as one mommy to another. Today she was not our doctor, she was another person, in a town where I have no people, who got me away. Who helped me clear my head. And that right there is the definition of compassion.
Assuming we have an uneventful night, Lorelei’s Orlando team has a plan in place to drop the sedation meds tomorrow at 6AM and extubate at 8AM. Please pray for our little warrior, that her body can handle this huge change and that it seamlessly picks up when the machines are no longer helping her. Hopefully a week of intubation was enough for her buckets of reserve energy to refill and her mitochondria had the chance to do a little R&R (since the rest of us missed out on our family’s vacay!)
Pray for the nurses, doctors, therapists, and everyone else involved in what we are hoping is an uneventful morning. And pray for us, Lorelei’s mommy, daddy, grandma, and all our family at home… because while I know God has a plan for us and I know He is side by side with us in this storm, I’m still an anxious mommy who simply wants more than anything, to see her little girl laugh again.
(Also many thanks to the nursing staff who is beyond amazing. I want to take them all home with me!!! They don’t do primary nurses here but have settled in with a few “primaries” for us. And a couple nurses went above and beyond to help us print 10 picture of Lorelei to hang around the room!)
With hope, Lorelei’s mommy,
