Hi everyone! Thanks so much for all of the support yesterday! We got through it- phew! And everything was very smooth. Gracie was SO GOOD and she is already back to her happy, wiggly self today :) Boy, Phoenix Children's Hospital sure does know how to make it easy on kids and parents. It was organized, there were toys for Gracie to play with while we waited, and they were very focused on her comfort. They gave her some medicine to relax her as she did get nervous when all the docs came in to talk to us- she knew they were coming for her! Well, this magical cherry medicine made her skunk as a drunk- ha! She was laughing and clapping all the way to the procedure room where we got to stay with her until she fell asleep. They should really give mommies and daddies some of that magical cherry stuff...
So the main thing I can tell you is that everything looked great, but she will not be getting her trach out any time soon. We got confirmation that there is no cleft anywhere, no scarring or granulation tissue, and nothing unforeseen. Also, there are no procedures or surgeries to do- she just needs time to grow. We go back to see the ENT in 6 months to see how things have developed. But that's okay! You don't want to jump the gun on this one- although Gracie has other ideas as she pulled her trach out while I was giving her a bath this morning...sigh. But at this point, she just looks at me and starts breathing through her mouth while I get a new trach out. No biggie, right? ;) I swear, she is messing with me!
So this is important to know- she can breathe on her own and does breathe around the trach, but the real problem would come into play while sleeping as her tongue falls back over her airway (see top left photo) where it should stay open (see top right photo). Now the bottom left photo is looking down her throat and that white tube is her trach. See the space around it? That is how she can move air to make some sounds. But you may also notice two little bumps sticking out just above the trach. This is the trachealmalacia and those pieces of skin move A LOT when she breathes. So the reason she is tricky is this combo of two airway obstructions. The bottom left picture is looking down into her little lungs- aw! We never got to see this before and it confirms that there is no lower airway problem . HOORAY.
So the GI doc was there too and did an endoscopy. Everything looked normal and healthy so we are just waiting on some biopsy results to make sure there are no funny allergies or anything. If not, then G's eating difficulties may be purely based on her anatomical challenges which, again,take time and practice to improve. We all need to remember that she is a 3 month old as far as oral feeding is concerned, so she is doing very well! Have I mentioned that she has gained almost a pound and grown an inch in the past month?? Yay!!!!!!!!!!!
So that's the long and the short of it. Our plans now are to start slowly introducing Gracie to more of the world (after cold/flu/RSV season). She is ready and so are we! It has been a long year to be holed up at home so each new experience will be so fun! Although, I was reminded to take it slow as I dared to run into a store with Gracie the other day which resulted in both of us becoming totally overwhelmed....one step at a time!
So hooray for good news all around :) Gracie and I are having a total chill-out, pajama day today and enjoying every minute! Hope this finds you all well and thanks again for the support!
So the main thing I can tell you is that everything looked great, but she will not be getting her trach out any time soon. We got confirmation that there is no cleft anywhere, no scarring or granulation tissue, and nothing unforeseen. Also, there are no procedures or surgeries to do- she just needs time to grow. We go back to see the ENT in 6 months to see how things have developed. But that's okay! You don't want to jump the gun on this one- although Gracie has other ideas as she pulled her trach out while I was giving her a bath this morning...sigh. But at this point, she just looks at me and starts breathing through her mouth while I get a new trach out. No biggie, right? ;) I swear, she is messing with me!
So this is important to know- she can breathe on her own and does breathe around the trach, but the real problem would come into play while sleeping as her tongue falls back over her airway (see top left photo) where it should stay open (see top right photo). Now the bottom left photo is looking down her throat and that white tube is her trach. See the space around it? That is how she can move air to make some sounds. But you may also notice two little bumps sticking out just above the trach. This is the trachealmalacia and those pieces of skin move A LOT when she breathes. So the reason she is tricky is this combo of two airway obstructions. The bottom left picture is looking down into her little lungs- aw! We never got to see this before and it confirms that there is no lower airway problem . HOORAY.
So the GI doc was there too and did an endoscopy. Everything looked normal and healthy so we are just waiting on some biopsy results to make sure there are no funny allergies or anything. If not, then G's eating difficulties may be purely based on her anatomical challenges which, again,take time and practice to improve. We all need to remember that she is a 3 month old as far as oral feeding is concerned, so she is doing very well! Have I mentioned that she has gained almost a pound and grown an inch in the past month?? Yay!!!!!!!!!!!
So that's the long and the short of it. Our plans now are to start slowly introducing Gracie to more of the world (after cold/flu/RSV season). She is ready and so are we! It has been a long year to be holed up at home so each new experience will be so fun! Although, I was reminded to take it slow as I dared to run into a store with Gracie the other day which resulted in both of us becoming totally overwhelmed....one step at a time!
So hooray for good news all around :) Gracie and I are having a total chill-out, pajama day today and enjoying every minute! Hope this finds you all well and thanks again for the support!