every breath he takes

There hasn't been a single night in Zachary's 18 months that he hasn't been on a ventilator or been given supplemental oxygen to help him breath and heal from his scarred lungs.  That could change soon, relatively speaking.

We got great news from the pulmonologist yesterday who told us we could stop giving Zachary the extra O2 he's been getting (which he only gets now when he sleeps) unless he needs it!  So as long as the O2 saturation in his blood remains above 92% he won't need the extra oxygen. 

That's good for a couple reasons.  First, there are side effects to prolonged administration of O2 in children, such as reduced respiratory drive and dependence on the additional oxygen.  Second, it is another obstacle that needs to be hurdled before we can stop putting Zachary on the ventilator at night, which if all goes well, could happen as soon as September.

Right now he gets about a 1/4 liter of flow when he sleeps on the vent.  That equates to about 23 percent O2.  (The air we breathe is about 21 percent O2, so you can see it's not too much).  The extra boost has helped maintain his oxygen saturation above 92%, which studies have shown is really important for kids like Zachary with chronic lung disease and pulmonary hypertension.  Our "sats" as those in the know refer to them are normally about 95% or higher. 

Zachary has taken a couple naps since the new orders and has done well without the added O2.  He kept his sats above 92 percent without any additional oxygen.  When he slept last night though, he needed a little booster, probably because he was sleeping deeper and breathing more shallowly.  He was able to maintain his sats with just 1/10th of a liter.   Not bad for his first night if you ask me.

Oops, as I am typing his sats have dropped below 90% while he's napping.  It went back up quickly though so I'm not giving him any O2 just yet.  I know his sats because we have a pulse oximiter, which is a machine that allows us to continually monitor his O2 saturation and heart rate.  There's an elastic band we put around his foot to which a probe is attached that shoots light through his foot that makes the reading.  I like to measure my sats every now and then just to make sure I'm ok, but that's another story for another day.

The next big respiratory milestone will be a sleep study in mid June, which will help determine whether he can maintain his sats while sleeping off the vent without having the carbon dioxide in his blood rising too much and causing problems.  If so, the vent weaning can begin.  If not, no changes until a repeat sleep study in December.  Keep your fingers crossed.