The doctors keep telling us that Zoe continues to do great. I'm taking their word for it as it's hard to tell with her mouth a mucousy and torn up mess, as well as with her discomfort levels climbing.
But, her numbers continue to look good--liver function and other markers they look at are plugging along. The main development is that they've started an oxygen stream blowing by her face to help keep her oxygen saturation levels up as they had started to dip. Apparently this is a common occurrence in babies as the mucositis progresses; the smaller air passages get more easily gunked up with the sloughing of the mucosal lining.
She is on 100% TPN now that she's not taking a bottle. She can't swallow anything now.
Jeff and I are doing okay. This is definitely a grind. The person who spends the night at the hospital ends up doing a lot of napping the next day. And, even with every other night spent at home, we are both experiencing pretty profound sleep deprivation.
I keep wondering if I am on the barest verge of coming down with something, facilitated by exhaustion; so I constantly pound the immune enhancing supplements and will myself to stay healthy.
There is no other option!
2 comments:
Dearest folks
As I read your account of sleep deprivation, I was reminded of the wonderful, yet often tiring experience of serious travel. Seems like you three are on an unfamiliar path headed to a still uncertain destination. This hard road now is a challenge, but the goal is just up ahead a few more miles. One foot in front of the other, one day at a time. We are all walking with you.
Love, Karelle
Your experts say she's doing well, and that's fabulous. I know how appearances can be deceiving, so just remember "this too shall pass, this too shall pass"...make it your mantra. X0X0 :)
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