Still Moving Forward

The positive changes and forward motion of yesterday have continued today.

Not much sleep last night for any of us because Lilyan doesn’t sleep well with the CPAP mask (we were initially told she would be getting BiPAP, but we learned today that someone either misspoke when they told us BiPAP, or someone changed their mind). Anyway, she has been on CPAP and not BiPAP, and she had a lot of trouble sleeping with the mask on. It didn’t help at all that her tiny little Asian nose made it almost impossible for even the most experienced respiratory therapists to get it sealed well, which caused the machine to alarm (loudly!) over and over and over and over again all night. She is also having a lot of trouble with chest secretions pooling in her lower throat where her very sensitive gag reflex is kind of working overtime. She is coughing more (a good thing, as it helps clear out her chest), and breathing treatments are keeping things loose and broken up, but her crowded little trunk is having a little trouble negotiating all of this, and that’s even worse when she is on CPAP. So, because of all of this drama last night, we all started the day tired. But Lilyan rallied and pushed herself to keep taking new steps forward all day.

She has gone most of the day with no CPAP, and she spent two fairly long periods out of the bed, playing. She isn’t smiling much, yet, but became more and more alert as the day passed, and began talking more as the last of her lingering sedation gradually left her brain. She has also not run any fever today and cultures all remain clear. The procalcitonin test (the one that indicated possible sepsis) dropped from a 4 to a 1.5, so that is no longer a concern.

Our oldest daughter came for a short visit again and brought us some clean laundry and spent a little time playing with Lilyan.  And Lilyan got some fun gifts from a couple of dear friends — a little stuffed, praying bear, and new outfits for her doll Kate. She also finally managed to stay awake enough to watch a movie all the way through today, and that was actually a really big step forward.

They want her to try sleeping with CPAP tonight just to make sure we are doing all we need to do in order to prevent any lung collapses and setbacks. So we may face the same challenges we faced last night, but we are encouraged by the fact that we are now clearly moving forward, overall. Tomorrow we will spend the day much like today, increasing body strength and endurance, and strengthening those lungs. If all goes well, tomorrow might be out last night in the ICU.

Here are a few pictures from our day:

Weaning off CPAP - 3-26-19 #2

Magnetic blocks – waking up those fingers

Weaning off CPAP - 3-26-19 #1

Playing with her oldest sister

Weaning off CPAP - 3-26-19 #5

Dressing Kate in one of her new outfits

Weaning off CPAP - 3-26-19 #6

Watching “A Dolphin Tale” with Kate

Weaning off CPAP - 3-26-19 #3

Doing a little art work

Weaning off CPAP - 3-26-19 #4

With her very soft, new, praying bear

2 thoughts on “Still Moving Forward

  1. I am a new reader, friend of Jason’s, and mom of 4 – 3 bio and 1 adopted. One of my bio kids (now 21) is a childhood brain tumor survivor. The journey with him, feeding tubes, trachs, central lines, chemo, radiation, surgeries, etc, allows me to see the last photo with the eyes of a mom who delights in seeing their precious child without all that stuff on their face. Just her. What a beautiful sight. Praying for you and Lilyan. So happy to see her progress! You are inspiring.


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