Update: Feb 2, 2017
Posted to Facebook 2/2/2017
Ana’s not doing well this week. She hasn’t had enough energy to go to school at all. She tried on Wednesday, but she kept having to sit down because she was so breathless. Today she barely got out of bed at all. By 4:00, I was afraid to even leave her room. I’m worried her lung collapsed or the tumor finally cut off the blood supply to her lung (or both).
And she’s so pale, so thin, so tired…her stomach hurt when she was awake today too. After 20 minutes of her wincing in pain, I gave her an oxycodone (she’s on oxycontin 24/7 now, but can have more oxy for “breakthrough pain”). That made her tired and she fell back to sleep.
I emailed Drs. Waldman and Yamashiro to try and get some clarity around her symptoms if her lung should collapse. I also explained that I’m afraid she just won’t wake up. Could that happen? Will there be signs for us to look for beyond this persistent fatigue?
In the flurry of responses I got from both doctors, this line stood out, “Yes, while it is impossible for me to make predictions as to timing, there is a chance that at some point she will simply fall asleep and not wake.”
Well, there it is – the parenting nightmare written in black and white. The fear you’ll walk into your baby’s room and find her not breathing in her crib. The fear that the flu, a car accident, an open swimming pool gate, a bad fall or 1000 other things will take your child too soon.
Dr. Yamashiro called tonight (after he read my panicked email) and said he thinks she likely just had a down day, though he can’t be sure. He told me some things we can look for which may mean the lung collapsed (fast breathing, blue tinge to her skin) – and we’re not seeing either of those things. After the call, Ana came down and ate (a tiny bit), tormented Emily for a while, then went back to bed.
I’m feeling hopeful that things will be okay tomorrow and Ana will have a good day (she wants to go to school). I’ve been wanting to write a proper thank you to everyone who donated money to Ana’s wish fund last month. I’m too exhausted to write that now, but I do want to share some photos of Ana and Emily (and Em’s friend Vera) enjoying their new Yogibo (a giant bean bag chair) we got with the wish fund money. Ana likes to stretch out on it and doze downstairs. She also loves her new MacBook which my father bought her (it’s pink!) Thank you, all.