by AJ started doing trach ring trials again — that’s time spent off the ventilator on just oxygen. Right now he’s doing 3x a day for 5 minutes. You can see the difference in the number of tubes attached to his trach.
Last time we did trach ring trials was when we first got to Iowa. We got up to an hour at a time three times a day and his lungs would start to struggle. We are hoping that with the meds for his pulmonary hypertension and the couple extra months of growing that maybe we will have better luck this time.
If nothing else, it’s a relief to know that if he pops himself off his vent he can make it for a chunk of time without it anyway.
We also have our next cath scheduled for April 6th. Hopefully we will have better lung pressures and good feedback from CHOP so we can start planning our return trip out there for his next surgery.
So that’s our big update with some actual news in it. Hope everyone has a happy Easter!!
