Nighttime Oxygen

A typical oxygen saturation is about 98-99%. I believe most people are hospitalized if they drop to 90%.

But thanks to Job's surgeries, his body can function, is supposed to function, in the 70s-80s. These low levels of oxygen do take their toll on his body, both in the short term (his digestive issues, for example) and the long term (predicted organ failure).

However, when he started walking back in February we quickly realized his oxygen saturations were dropping really low as he exerted himself. It's been hard to get good reads while he's now running around, but the guess was that he hit 38% on Friday at our appointment.

Job bounces back pretty quickly once he rests, but the downward trend isn't sustainable (thus heart transplant list).

Because Job gets so "blue" when he's active, he should be on oxygen all the time. But he's an opinionated toddler who doesn't want a nasal cannula on his face, thank you very much. Most toddlers don't want oxygen so for this whole summer his teams didn't even want to bother to try.

But in his trials on Friday, we did get him to wear the mask (thanks to Isaac modeling it and Ezra talking about how cool it looked) and his sats bounced up 15 points!

Oxygen wasn't supposed to help him so drastically, but Dr. Files insisted on trying it and sure enough, it worked and well. Well enough to try to force it at night.

The best guess (because Job won't cooperate with expectations) is that his pulmonary AVMs ("bad," narrowed veins) aren't allowing enough oxygenated blood through. This was the reason Job was on oxygen from September 2016-August 2017, but the combo of his axillary fistula (surgery) and sildenafil (medication) worked to get him off.

Since PAVMs are so rare for kids like Job, the fistula is pretty rare too. He was only the second kid at SCH to have it done, and the smallest, so they made their best estimate for the size of the fistula and they ultimately made it too small because the PAVMs are back. They've been back for a few months actually.

So we are now going to start putting him on oxygen at night (or trying to, at least). The thought is that he'll then wake up properly oxygenated and have more stamina throughout the day. I'm skeptical that he'll keep it on but excited to see if it will help!

We kept some of the oxygen supplies from our last oxygen experience but are waiting for a new delivery of masks and larger canulas to officially start this up.