Wyatt didn't have the best day today. In the early hours of the morning he had an episode, then two others, one at 7am'ish and the second around 2pm this afternoon. When he has an episode (dirty diaper, or just plain mad at the world for whatever reason) he gets so upset that his O2 saturation drops very low, as well as his heart rate. He usually turns blue when this happens and each time the Nurses and Respiratory Therapists have to take him off the ventilator and bag him (ambu bag), it takes a bit for him to recover and once he does he is exhausted. They did a blood gas this morning and his CO2 was up to 100 (should be around 35-45) so they increased his vent pressure (fill his lungs more) to 31 and his reparations to 38 (more breaths). Blood gas was redone a couple hours later and CO2 was back down to the mid 50's. Since his weight is increasing they are increasing his Phenobarbital to a slightly higher does and adding a maintenance dose around 5pm to keep him comfortable.

We received the preliminary results from the genetic testing facility and Wyatt has Thanatophoric Dysplasia, Type I. We thought is was type II but it is not.

Below is a video of Wyatt getting his ET tube moved from one side to the other. The ET Tube holder keeps him from opening his mouth very far so when it is unsecured he likes to stretch his jaw out and in this case let out a big yawn. We have watched this video countless times, hope you enjoy it as much as we do.

-Dad