The Journey of James Weston

James is now up to 1 hour twice a day off the ventilator! Let me tell you it is one of the best feelings in the world once these ventilator dependent kiddos get to trial off the the vent (called "sprinting"). Since James was born we've been very adamant about making sure he wasn't disconnected for very long and tried to avoid it if it wasn't necessary. We already had to disconnect him for trach changes, putting his circuit under the crib railing, placing him inside his pack and play, taking his T-shirt off, and cleaning his ballard. We are talking about disconnecting James for a matter of seconds because any longer than that the ventilator beeps and then whistles like a train that sounds a shiver down your spine letting you know that you need to connect him immediately. The sound is also specific to the LTV ventilator. Over this past year, there were times in the middle of the night when pitch black that James's circuit would become disconnected. I would screa...

Monday, October 31st, 2022 James had an eye appointment in the morning. He's lost appointment with the pediatric ophthalmologist was in January. We were scheduled to see her in May but had to reschedule and then with COVID and several trach infections we ended up just canceling to reschedule it a later date. To be honest we haven't been eye patching ss much as we should. Having James where the helmet this summer was really hard to also do eye patching. 👀 When we arrived the lobby was packed. We waited 30 minutes for us to be called back. Then we were seen by her assistant. She says, "Oh that's such a cool sound machine, what is that white noise?". We replied, "No that is his ventilator". 🙄 Does anyone look at a chart before they talk to a patient? The assistant went over all of the regular things like height, weight, and changes to medication. Then she dilated James' eyes and how does go back out to the lobby to wait for another 30 minutes. But at ...