We’ve shed more tears today. More than yesterday, more than Diagnosis Day. Gavin went back on the oscillator around 1am this morning.
It is excruciatingly heart-wrenching to be so close to being free of ventilators only to go all the way back to where we were after the biopsy.
Gav has not been muscle relaxed (pharmaceutically paralysed) like he was last time on the oscillator so he has been able to express his frustration more. The breathing tube is below his vocal chords so he can’t make sounds and there’s nothing more distressing than seeing your child silently cry.
The hardest part of today was the discussion we had with his doctors when they told us that if he doesn’t improve in the next few days that they want to try Etanercept. The drug is extremely risky with a low success rate, but it may be our only shot.
We need the steroids to work. They must.
We all have to believe in our little warrior and his invincibility. He’s going to stand up and fight for his lungs and prove all the doctors wrong once again.