Six Liters to High Flow: Cool Band Name or Worst Nightmare?

I wish we were talking about a cool new band, but we’re talking about a nightmare instead.

Jax is getting sicker and his oxygen needs keep increasing. He was working hard to breathe and even on six liters of air, his saturation was only 92.

They decided to move him to a new breathing machine called “high flow.” This gives more pressure to keep his lungs inflated and also allows the option to add pure oxygen to the air. Right now, he’s at 50% oxygen and his saturation is 97%. His heart rate lowered and he’s not struggling anymore. Clearly, it was a good move.

He’s sleeping now, but the new mask is really stiff, so he has to lay at a weird angle. He’s so tired that I don’t think he really cares. Tomorrow, we will try to switch him from the mask to a cannula because it would be much more comfortable. We tried cannula last night but Jax was having none of that and kept taking it off. I think he’s more comfortable with the mask because he’s used to his daily neb treatments at home.

Jax also had to get a new IV tonight. This was pure torture because he is terrified of anyone touching his hands since they needed four attempts to get a good IV in on Saturday when we got here.

Jax is sad and sick and tonight, he curled up in my arms, looked into my eyes and sighed “Mommy, I want to go home.”

Me, too, buddy. Me, too.

Unfortunately, that’s not going to happen any time soon.

Thanks for all of your positive thoughts, prayers, care packages, and visits. They make the days better.

I don’t think it has really hit me yet. I simply cannot believe this is happening.