Yesterday was the big day! And we braved yet another bronchoscopy/laryngoscopy....meaning that Gracie was brave and amazing and Ramsey and I made it through as well ;) But to give you the whole saga, I have to back up to the night before.
We were just so excited for our visit to Phoenix Children's Hospital that we thought we would take an evening trip to the ER as well ;) And I wish I was kidding! Ramsey had just gotten home from work as I was getting Gracie out of the tub. I wrapped the towel around her and she took the three steps into her room with me guiding her from behind. Then she got tangled in her towel and awkwardly laid down for trach care. When I unwrapped her from the towel she was holding her left arm and crying. The poor kid! As nothing had really "happened" we weren't sure at first what was going on, but it became clear that she was in real pain and could not straighten her arm. I called our on-call pediatrician and she advised us (correctly) that it was a dislocated elbow and to take her to the ER. I am happy to report that, once again, PCH was amazing! They got Gracie right in, gently put her elbow back in place, gave her some tylenol and sent us on our merry way! Gracie was right as rain and ready to play! Ramsey and I were shaken up though- phew! We all got to bed at about 10pm and set our alarm for our 6:30am check-in time for the next day...... did I mention that through all of this poor Ramsey seems to have some kind of stomach bug? Seriously.
Okay, so we make it out the door the next morning arriving only 10 minutes late (which to me is on time these days). I had been preparing Gracie for her big day by explaining what was going to happen (in kid terms, of course) and she was a ROCK STAR! Very excited to wear the special bracelet from the friendly nurse, very excited about the coloring book and beanie baby she received, and just cool as a cucumber. We didn't know that babies are not allowed back to the triage area, so Ramsey went back with Gracie and I waited with Ben. That was very tough for me, but Gracie wasn't scared at all! She and I sent each other text messages while she waited to see the "friendly doctor". The next thing I know, the scope is over (okay, that's a lie- I was fighting back tears and it seemed like an eternity) and the ENT came right out with pictures and news. So here it is:
*The airway has improved and everything is "normal"
*From a strictly airway standpoint, she is possibly ready to get the trach out
*The space (or lack there of) between the back of her tongue and epiglottis is still very tight.
*If she will need surgery (eye) or needed to be intubated in the case of an emergency, it would be very difficult to do and special tools would be required.
*We are scheduling a sleep study to see if sleep apnea exists- this is the real test. If she has airway blockage while sleeping, then we wait. If not, then we have a decision to make.......
I wish it was more clear cut and although we truly got all good news, I can't help but feel a little disappointed that there was not a decisive answer. So that's really all I can tell you for now. The sleep study will be huge and it is a great sign that the doctor wants to take that next step. It's going to be a big summer of emotional ups and downs, medical procedures and some stress, but it's all worth it. And although I feel a bit tired and overwhelmed today, I want to stress how well Gracie is doing and that she is totally headed in the right direction. She is super-duper-amazing and as soon as I find the battery charger for our camera, I plan to take some videos of our big talker!!!!!!!!!! Words, words words!!!!!!!!!!!! Yay! Thanks for all of the support everyone :)
We were just so excited for our visit to Phoenix Children's Hospital that we thought we would take an evening trip to the ER as well ;) And I wish I was kidding! Ramsey had just gotten home from work as I was getting Gracie out of the tub. I wrapped the towel around her and she took the three steps into her room with me guiding her from behind. Then she got tangled in her towel and awkwardly laid down for trach care. When I unwrapped her from the towel she was holding her left arm and crying. The poor kid! As nothing had really "happened" we weren't sure at first what was going on, but it became clear that she was in real pain and could not straighten her arm. I called our on-call pediatrician and she advised us (correctly) that it was a dislocated elbow and to take her to the ER. I am happy to report that, once again, PCH was amazing! They got Gracie right in, gently put her elbow back in place, gave her some tylenol and sent us on our merry way! Gracie was right as rain and ready to play! Ramsey and I were shaken up though- phew! We all got to bed at about 10pm and set our alarm for our 6:30am check-in time for the next day...... did I mention that through all of this poor Ramsey seems to have some kind of stomach bug? Seriously.
Okay, so we make it out the door the next morning arriving only 10 minutes late (which to me is on time these days). I had been preparing Gracie for her big day by explaining what was going to happen (in kid terms, of course) and she was a ROCK STAR! Very excited to wear the special bracelet from the friendly nurse, very excited about the coloring book and beanie baby she received, and just cool as a cucumber. We didn't know that babies are not allowed back to the triage area, so Ramsey went back with Gracie and I waited with Ben. That was very tough for me, but Gracie wasn't scared at all! She and I sent each other text messages while she waited to see the "friendly doctor". The next thing I know, the scope is over (okay, that's a lie- I was fighting back tears and it seemed like an eternity) and the ENT came right out with pictures and news. So here it is:
*The airway has improved and everything is "normal"
*From a strictly airway standpoint, she is possibly ready to get the trach out
*The space (or lack there of) between the back of her tongue and epiglottis is still very tight.
*If she will need surgery (eye) or needed to be intubated in the case of an emergency, it would be very difficult to do and special tools would be required.
*We are scheduling a sleep study to see if sleep apnea exists- this is the real test. If she has airway blockage while sleeping, then we wait. If not, then we have a decision to make.......
I wish it was more clear cut and although we truly got all good news, I can't help but feel a little disappointed that there was not a decisive answer. So that's really all I can tell you for now. The sleep study will be huge and it is a great sign that the doctor wants to take that next step. It's going to be a big summer of emotional ups and downs, medical procedures and some stress, but it's all worth it. And although I feel a bit tired and overwhelmed today, I want to stress how well Gracie is doing and that she is totally headed in the right direction. She is super-duper-amazing and as soon as I find the battery charger for our camera, I plan to take some videos of our big talker!!!!!!!!!! Words, words words!!!!!!!!!!!! Yay! Thanks for all of the support everyone :)