Jax had a really rough night. He was working very hard to breathe and could not keep his oxygen saturation up. He was switched from wall oxygen (21% oxygen, or room air) to 8 liters of high-flow with 90% oxygen. At this point, he was still retracting severely and the decision was made to consult with the PICU (pediatric intensive care unit).
They were prepared to transfer him to PICU and start continuous nebs. Luckily, Jax chose that exact moment to stabalize.
His breathing wasn’t as labored, and he was maintaining a saturation of 93 on the high-flow so they decided to keep him in his current room so we didn’t have to pack everything up and move rooms.
After that scare, he did fairly well for the rest of the night. The high-flow can be uncomfortable because they add humidity. Jax was bothered by the mask and everyone and the IV and was very angry.
“Mama! I want to go home. NOW!” he yelled at 1:00 am as he tried to rip his IV line out, for the fourth time. It was a long night. According to my Fitbit, I got 3 hours of sleep and was awake/restless 36 times. So. Yeah. I could use some more coffee.
Even though Jax didn’t sleep well, he’s been up playing today. He’s still on high flow oxygen and nebs every 2 hours, but has a bit more energy. They brought in a mat and we played trains. He was able to play for about an hour before he got pale and wanted to get back in bed. He’s tired, but restless. He doesn’t want to be here, but considering the amount of support he needed last night and so far today, I don’t see us leaving anytime soon.
I’ve already used up all my tricks and not even the promise of ice cream is making my little buddy happy. 😦
I hope tonight is a better night!
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An Early Start 
oh man…prayers for you all to have a much better night tonight! big hugs from Maddie and I 😉
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