Well, we sure did make lemonade out of our little upset at the pediatrician ;) It prompted us to see another ENT doc who is well-known in the valley and fellowship-trained at Cincinnati Children's Hospital. We actually like our current ENT, but with decannulation on the horizon, we just felt like it was time to have a new set of eyes on our little pumpkin. The information is pretty similar, but perhaps put in a different way. Here is the comparison:
Timeline:
A laryngoscopy in March/April to determine if Gracie is a good candidate for decannulation. They will look for growth, stability etc of her airway and will determine if any surgery might be necessary to open the airway further or remove scar tissue. Of course, she may not need any surgery at all! Our first ENT sees many signs suggesting that Gracie will soon be ready for decannulation. The "new" ENT thought that she was not ready and it may be another year. But again, no one really knows until they have a look inside her airway.
Diagnosis:
Gracie has Layrngomalacia according to our first ENT. Our second ENT thinks that trachealmalacia is our main problem. The truth is, she has both. Which is "worse"....who can say? Gracie also has some symptoms of Pierre-Robin sequence, but no cleft palate, so this is why her case has been a bit more complicated than the average bear. But both docs are really happy with Gracie's progress and we have been assured time and time again that all of this will go away with time and growth. And let me tell you, we are counting our blessings because I saw and mom and her son in the ENT's office today that would trade places with us in a heartbeat...
Hospital:
Our first ENT is at Cardon Children's Medical Center where Gracie stayed those five (long!) weeks after she was born. The second ENT practices out of Phoenix Children's Hospital, where we would definitely have access to more specialized care, but then again, everyone at Cardon's knows Gracie literally inside and out.
So we are getting new information daily as Ramsey and I explore and discuss our options to help Gracie Jane become tube free. And it will happen! We may not have an exact "when", but as long as she gets there in a safe, healthy way and comes out of this with no insurmountable oral aversions, then we can be patient! In the mean time, Gracie is as happy as can be!
Timeline:
A laryngoscopy in March/April to determine if Gracie is a good candidate for decannulation. They will look for growth, stability etc of her airway and will determine if any surgery might be necessary to open the airway further or remove scar tissue. Of course, she may not need any surgery at all! Our first ENT sees many signs suggesting that Gracie will soon be ready for decannulation. The "new" ENT thought that she was not ready and it may be another year. But again, no one really knows until they have a look inside her airway.
Diagnosis:
Gracie has Layrngomalacia according to our first ENT. Our second ENT thinks that trachealmalacia is our main problem. The truth is, she has both. Which is "worse"....who can say? Gracie also has some symptoms of Pierre-Robin sequence, but no cleft palate, so this is why her case has been a bit more complicated than the average bear. But both docs are really happy with Gracie's progress and we have been assured time and time again that all of this will go away with time and growth. And let me tell you, we are counting our blessings because I saw and mom and her son in the ENT's office today that would trade places with us in a heartbeat...
Hospital:
Our first ENT is at Cardon Children's Medical Center where Gracie stayed those five (long!) weeks after she was born. The second ENT practices out of Phoenix Children's Hospital, where we would definitely have access to more specialized care, but then again, everyone at Cardon's knows Gracie literally inside and out.
So we are getting new information daily as Ramsey and I explore and discuss our options to help Gracie Jane become tube free. And it will happen! We may not have an exact "when", but as long as she gets there in a safe, healthy way and comes out of this with no insurmountable oral aversions, then we can be patient! In the mean time, Gracie is as happy as can be!