6:00 pm – Monday, March 25, 2019:
So, our morning started early and without much sleep, as I said in my update earlier today. And it turned out to be a critical day in Lilyan’s spine surgery journey.
We believe it’s safe to say that we have officially turned the corner unless this mysterious and capricious fever eventually turns out to be something surprising. Neither set of cultures has grown any bacteria at all, yet, so we may never know what’s causing these high temps to keep popping up and then disappearing again.
Anyway, I’ll let the pictures do much of the talking today:
At 10:15 this morning, the team suddenly made the decision to pull Lilyan’s breathing tube and see if her body would be able to handle all of the fluid in her chest better. They decided to ease her down by moving to a BiPAP for awhile first. She was so completely exhausted from all of the coughing and choking and suctioning all morning. So, while she wasn’t crazy about this mask over her face, at least it wasn’t down her throat, and she fell into a deep and naturally peaceful sleep.
After she woke up from her nap, she was feeling a little bit fiesty and kept trying to ask a question. So her nurses took her mask off for a moment, and we heard her very hoarse, but beautiful little voice for the first time since before the surgery. Because of the risk that she might reach up and pull her breathing tube out accidentally in her drugged fog, she had to spend most of the time since surgery on Wednesday with her arms restrained at the side rails of the bed. Her first wish was to have her arm restraints removed so she could stretch. She started with her left arm, and this one, seemingly tiny thing made her deliriously happy. They had to add some padding to her face to protect her skin from the very tight mask.
Then she stretched out both arms and positively glowed. She just lay there like that, all stretched out on the bed like someone basking in the sun on a beach, and she was just the cutest thing, ever! After about 20 minutes without the mask, she started having trouble breathing, so they started to put the mask back on. At one point, she very politely told her nurse, “That mask is too tight on my nose,” in a voice that clearly communicated, “so I won’t be using that anymore, thank you.” She didn’t win that one, and as soon as it was back in place, she once again, fell into a deep sleep.
After a really good nap, an occupational and a physical therapist came to start working on getting her back to full health. She was excited about getting out of bed.
Her therapists brought her a wheelchair with a reclining back and she sat here for an hour, blowing bubbles and watching a movie, before she started to struggle a bit with her breathing again. So she got back into the bed, got the mask back on, and took another long nap for about two hours.
After that nap, she was finally completely alert enough to meet her new baby hippo and the new dog that Daddy insisted she should have for National Puppy Day, even though Lilyan wasn’t, yet, really conscious on that day.
Now she is playing on the iPad again while her new animal friends and Roslyn’s Maggie and Murphy look on.
Incredibly, there have been no coughing episodes or any problems with fluid in her chest now that the breathing tube is out. And they feel like they have now gotten enough of the fluids off to stop the Lasix tonight. These were some really huge steps forward today.
The plan is for her to sleep with the BiPAP mask on tonight, and tomorrow they hope to continue lengthening the windows of time she is able to go without the mask on. She tires very easily and requires multiple naps a day, but we think her progress today is just amazing, and we are so thankful.