This afternoon we had our ENT appointment. I'm surprised we made it up there, I woke up to about 2 feet of snow. Yuck!
His ENT scoped Jax down his trach. The good news is, there is no scar tissue at the bottom of his trach. The bad news is, he has tracheal malasia big time. If you don't know what that is its were the trachea just collapses on itself. Does it surprise me? Of course not, tell me something this kid doesn't have. So when we suction and we think we are hitting something, its the wall of his trachea. They did tell me when he was a baby that he had a floppy airway, but he'd never been scoped to check before.
The plan, to put in a longer trach. No surgical intervention necessary. Wahoo!! They have to custom make a longer trach to try and bypass as much of his trachea as possible without running into were his lungs branch off. So now we just wait until our custom trachs come in. Man this kid has to have everything custom made for him.
Spoiled brat!
Hey Lacey! Had to go back and catch myself up on some of your posts. Glad that all went well at the ENT today. Your little guy just loves to keep those docs busy! I am with you on the mickey buttons. I hate them too. Never had a mini so I can't compare but knock on wood Liliana's current button has been in for about 6 weeks now. Amazing! I'm sure you read my posts about how I was changing them weekly for about the first 7 weeks she had it. Bummer! Well, I am so glad that all is well and Jax is doing great!
ReplyDeleteYou said it, what does this kid not have!!! Just reading about it made me nervous, well half of it goes over my head and thats probably why it makes me nervous and there you are so brave and practical, and strong!! But yeah for no op!! That is a relief for sure. I hope this custom made trach makes things easier now for Jax.
ReplyDeleteBtw what red cheeks this handsome boy has!!
Hope that makes things all better :) We have our first ENT appt tomorrow. Not even sure why. Dr. Durham made the appt for us...
ReplyDeleteWe must be getting the storm you had tonight. We are supposed to get a lot of snow too. Glad to hear that Jaxson doesn't have any scar tissue there. Also very glad to hear that there will be no SURGICAL intervention. Yah!!!!!! Hoping that the long trach will help out.
ReplyDeleteBut, what a cute and wonderful spoiled brat! :)
ReplyDeleteJax does like to keep you and all the docs on their toes, doesn't he?!
So glad to hear that there is a somewhat easy fix to the problem! The last thing Jax and your family needs is another surgery!
Have a great day! HUGS!!!
Glad it doesn't require surgery and that you found out what the problem is and are now back at home safe from the snow!
ReplyDeleteLOL - Lacey I LOVE your sense of humor! So sorry he has tracheal malachia. What a drag. But I guess the good news is he's already trached so that should help. Glad you know what you're dealing with too. It always helps to know. Love to you guys!
ReplyDeletegetting caught up here - ugh, what a week you have had. I am so glad that the longer trach is an easier fix - thank goodness. The poor kid needs a break. Did you get a new mini mickey or did I miss that? I wish you had more nursing. I had to do two nights this past week - get up, she's vomiting, more O2, more suction, more vomit. Poor kid. You amaze me - you just keep going. Hugs to you and Jax
ReplyDeleteCustom made - that's ok and I know you know that because that's just why Jax is Jax. Love his picture. he is a cutie
ReplyDeleteI am so glad no surgery is required! He deserves everything custom made!
ReplyDeleteHe is a VERY SPECIAL part of this world we live in:>)He's just keeping everyone on their toes!!
ReplyDeleteYou're so funny. I'm glad it all turned out ok. Not that anything being floppy is great news but at least it's manageable.. and without any cutting. I second your wahoo!!!
ReplyDelete2 feet of snow?! Wow. Sophie has tracial malacia too. Supposedly they will out grow it, which I suppose is the good news. Makes catching colds a bear though. ((HUGS))
ReplyDelete---Jen
No on the Mayan - it was already full when I tried to register...
ReplyDeleteGeeze! He is super spoiled! Im glad you finally have it figured out! And...on the plus side, we finally have a picture of ALL of his face!! And what a dam cute face it is!! Merry Christmas you guys!
ReplyDeleteglad to hear the fix doesn't require another surgery!
ReplyDelete