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! Ramsey and I taking one for the team and sleeping in those awful hospital room "recliners". One night sure beats five weeks!!!!!!!!
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Okay, round 2! We will be heading to Phoenix Children's Hospital tomorrow (Friday the 26th) for another go at the capped overnight trial. Hopefully this time will go more smoothly.... We are not totally sure what to expect other than the fact that Gracie will not have to be hooked to so many things. I think it will be for one night, but I am preparing myself for many different scenarios. Like, if things go well, then what? Will they take the trach out and then keep us for observation? Will they review the results of the trial and send us home? I am just not sure. Or they could conclude that she is just not ready yet. We'll see, I guess? Wish us luck and we will keep you posted!
I talked to our ENT on Monday and I was instructed to have our pediatric pulmonologist admit us to the hospital for the capped, over night trial. Too bad he did not tell me that in first place as I waited a whole week to get this info, but I think it will all time out for the best. I was pleasantly surprised to get a call right back from our pulmonary nurse. She told me that this would be no problem and to call her back on Thursday or Friday letting her know what day we choose. What? Which day WE choose?! Boy, that was refreshing! So I want to make sure that Gracie has time to recover from her impending eye procedure, but I feel so encouraged that this could all happen relatively quickly. And then we have to get Gracie to sleep in a hospital bed without freaking out ;) And then we will have our answer about the trach! One day at a time....
Ramsey and I talked to our ENT last Monday and he gave us two choices:
Repeat the sleep study...no thank you!....or have an overnight in the hospital where she is capped and hooked up to a pulse-oximeter. The later is our choice as Gracie will not have to be tethered to so many things. Originally we wanted to avoid a hospital stay as it just seemed more traumatic and germ-ridden, but now it doesn't seem so bad- ha! So when I called our ENT back to tell him our decision, I was informed that he was out on vacation (the nerve! ;)) all week and that we will have to wait until Monday the 15th to finalize our decision and then get things authorized and scheduled. And who knows how long that will take? Honestly, the summer is ticking away and we are getting nervous. We can't miss our window before cold/flu/rsv starts up.....oy. So please send some happy insurance/scheduling vibes our way! In the meantime, we have been trying out some new looks ;) |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
March 2014
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