We are thrilled to share that Gracie's overnight capped trial in the hospital was a great success :) I think we are a mixture of thrilled, shocked, elated, and in a bit of disbelief. We imagined that things would go okay if we got her to sleep through the night, but we anticipated some minor snag or somewhat inconclusive results. We are just not used to anything going smoothly! But it was smooth. Amazingly. Gracie slept all night and her oxygen levels never went below 98%. She can BREATHE!!!!!!!!!!!!!!! I am just shaking my head. The last time the three of us slept in a hospital, it was during the first five weeks of Gracie's life and we didn't know when (or I hate to say it, but if) we would get out of there. Her oxygen levels were CONSTANTLY desaturating. She had to be tube fed. It was awful. Well, our experience on Friday was the POLAR OPPOSITE of that! She skipped into the hospital- singing, and jumping the whole way! We made it a little party in the room. We brought her "friends", some Curious George to watch, bottles, snacks....a regular slumber party! But this time, Mommy was there too! Hooray for Grandma staying with Ben all night! It was my first night away from him and he took a bottle- YAY!! And although Ramsey is Super Dad, it was huge to have both of us there. And Gracie deserved to have us all to herself that night :) We had a great night nurse who totally allowed us to take charge, which we really did. Vital checks every four hours? No thank you! Diaper change? Uh, no- we've got that covered. Unnecessary blood work and testing? NO THANKS. We knew that we had to keep it simple and as stress-free as possible so that Gracie could sleep. And it worked and we got our answer! As confirmed by our Pulmonologist in the morning, Gracie passed the test and it looks like the trach is coming out!!!!!!! And then she skipped right out of that hospital room and Ramsey and I felt like we had won the lottery :) So as it stands right now, our ENT is collecting data from the hospital and pulmonary. He will look over everything and then we will go in to see him ASAP. And then they just take the tube out and slap some gauze over the hole in her neck! After ALL THIS, that's all it takes, apparently. If the hole in her neck doesn't close on it's own in ten days or so, they will do a little suture. So we are obviously excited but also a little trepidatious. It's a big step into the unknown. We have had direct access to Gracie's airway her whole life, so it freaks me out a little. I am going to have to retrain my brain! So there are still a few steps, some monitoring, maybe breathing treatments etc., but we are on our way! This is a big and wonderful change for our family and I am betting that we will get used to it pretty quickly :) More soon!
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Ramsey and I taking one for the team and sleeping in those awful hospital room "recliners". One night sure beats five weeks!!!!!!!!