A Milestone I Didn't Think We'd See

A week and a half ago, as our world was coming crashing down on us, I didn't think I would see today. I didn't think I would see the day when Mason turned 23 months old. I feel so thankful for today and am praying that I get to see many, many more milestones and birthdays. I am praying, but trying to keep grounded knowing that Mason may still not make it out of the hospital.

We continued some weaning today including bringing down the inspiratory pressure on the ventilator to 22. I can't remember if I explained this before, so please excuse the redundancy if I did. The inspiratory pressure is the amount of pressure created by the ventilator (measured by centimeters of water) pushing the oxygen/air into Mason's lungs to open up those little air sacs (alveoli). 3 weeks ago, he was on a ventilator setting that didn't measure the pressure, just measured the volume of air pushed into his lungs. However, once we paralyzed him for the detox, those little air sacs started to close up. So, they changed the ventilator settings to force them to open with every breath in and keep them open with every breath out (the latter is call PEEP and that's set at 12). Before this hospitalization, I didn't really know anything about ventilator settings, but am learning more and more every day. Basically, Mason is still requiring a lot of help to open and keep open his alveoli. That pressure both on the way in and held in there with breathing out can cause damage to his lungs. We won't know until much later how bad it is, but this again is why the doctors don't think he will survive this hospitalization. They believe the damage is significant enough that when added to Mason's already bad lungs, the damage is insurmountable. We will just have to wait and see. Our hope, our prayer, is that the damage is minimal and not lasting.

We also continued to wean down the oxygen concentration to 80%. We tried 78%, but when Mason awoke, he was too frantic and didn't hold his saturations well enough for Mama's comfort. It's hard to see him saturate at 98 and 99% on a certain oxygen concentration, but then when he wakes up, he doesn't relax enough to take even breaths, so he desaturates. Up to this point, since starting on the higher dose of steroids again, Mason has been able to hold his saturations at least in the 70's when awake. Tonight, he reminded me of just how sick he is. He was playing for all intents and purposes, but breathing rapidly and not deeply enough to fully oxygenate his blood. So, though he looked like he was playing and a little agitated at the situation, his saturations told of much less tolerance for being awake. He held steady in the 50's and 60's unless I turned up his oxygen concentration for a bit so he could saturate in the 70's and 80's. I'm not sure if this is a sign of coming down on the steroids or on the baseline oxygen concentration, or if it's just an agitated 2 year old in one moment in time. I may never know, but it reminds me of just how fragile my little boy really is and how much I need to keep myself grounded to protect my emotions. It's so easy to get sucked into the "he's doing so much better; the doctors must have been wrong" and then come crashing down when he doesn't do so well.

For now, I will look upon my little boy sleeping comfortably and peacefully in his PICU crib, saturating at 96% on 80% oxygen/20% air, with his ventilator set at a rate of 28, inspiratory pressure of 22, inspiration time of 0.65, and PEEP of 12, be thankful for today - a day I didn't think would come, and continue to pray for a good night's sleep and a better tomorrow.