9:26 AM
Update on Kylie:
It’s been a very looong morning.
One of the scariest of my life.
Around 4:45 am Kylie started to desat and her pulse ox woke me up.
After turning her up on her oxygen multiple times she didn’t come back up. Her sats continued to drop. She got into the low 70s and was fighting me extremely hard.
Trying to hold oxygen on someone fighting to breathe is a LOT harder than I thought.
She briefly passed out.
I maxed out her oxygen tank and she slowly started to come up.
I began to gather her things to bring her to the ER.
She was fine and playing so I figured it was a random episode and I just needed to get her checked out.
While gathering our stuff she started to desat again. This time she dropped quickly into the 60s and I couldn’t get her numbers to come back up. She passed out and turned blue. I started to bag her while calling 911.
The fire department showed up first and they had a stronger oxygen tank and they were able to give her more than I could
EMS followed quickly after. After getting her stable using 15 liters of oxygen (which only kept her around 90). We loaded up and came to Texas Children’s.
The ER did their work up and Kylie started having more episodes of desating and all of us were doing what we could to keep her SATs up. Eventually it was decided to put her back on the ventilator.
All the tests came back negative so we are at a loss what is wrong. I was sure it was pulmonary edema because she was doing some belly breathing.
Now we are waiting on transplant to come and give us the next steps on what to look at.
Please pray we can figure out what is wrong with Kylie and causing all of these oxygen problems. Pray it’s not rejection related.
We love you all so much.
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Keep up the prayers , Warriors!
Lonnie
