Also, I talked to my ped about this coughing Jax does. He's pretty much done it since he was trached. He has small periods of a few days to a week where he does good, and then it comes back with a vengeance! I told her it is unlivable! You know how I don't sleep at all when he does this, I've complained about it here many times! I have a night nurse twice a week, the rest of the time its me up all night. They gave him longer trachs to bypass as much of the tracheal Malaysia as possible, that hasn't helped. They started flovent, and even oral steroids, that hasn't helped. So we go back to ENT to re scope him and see whats going on. Pulmonology will probably start nebs 4 times a day while we wait to see ENT, just to rule out reactive airway disease. We already know his lungs are horrible, but nebs have never worked in the past and the flovent is not working, so we think this is strictly airway. I just hope this is not going to need airway surgery! We know he needs it before the trach comes out, but hopefully he doesn't need it now. Its a huge surgery with a long PICU stay!
Here's day 2 of Disneyland. That day we met up with Peanuts mom and her brother. Peanut didn't come because she has sensory issues with Disneyland, but the boys had a blast with her brother. I don't know why I don't have any pics of them though!
Me and Jax on Dumbo!
My gorgeous boys!
Me and Jax on Alice in Wonderland!
The man and his mouse!
Even on vacation the boys end up in the same bed!
Day 3, California Adventure.
Elastigirl, look at that body!
Carters first time on California Screamin! He doesn't look nervous does he?
Mondo's first time on California Screamin. I'm so proud of him for trying it! He HATES rollercoasters.
Carter and his dang turkey leg he wanted soo bad. Disgusting!
Since Peanut didn't come to Disneyland, we met up with them again in Downtown Disney for dinner!
Great pictures! They make me want to be there! So glad that you had a great time!
ReplyDeleteGreat pics, Lacey - so glad you all had so much fun. Saying prayers for Jaxson's coughing issues to be resolved! - Maureen Claypool
ReplyDeleteLooks like such a great vacation. Carter and I would get along well LOVE the turkey legs!
ReplyDeleteHope the ENT solves Jax's coughing issues without surgery.
Love it!!! I wish I was there right now! I also love how your boys end up sleeping in the same bed! What brotherly love! Really cute! Jax looks like he is having fun just hanging out!
ReplyDeleteThat stinks about Jax coughing how annoying that nobody has any answers! Thats how it goes here though, right? Nobody ever knows anything.
Oh and just so you know. The blog you are reading is the one my brother in law updates from my blog. I don't know if he will notice that I had pics on there. So if you want to check out the pics you might need to go to my other blog. I can't change anything on the hopeformaggie blog. Sorry about that. He made that to make it easier for people to get updates but he is really busy and doesn't always check to see if I've updated.
Can't wait for day three!!
So fun. Steve's brother is going to Disneyland for Christmas, and Steve actually gave it a 'maybe' that we could join them - Max walking or not (most likely not).
ReplyDeleteHow wonderful! The boys all looked like they had a great time! i hope you did as well. So what part of Cali is your husband from? I am from the bay area (Santa Cruz)
ReplyDeleteSorry to hear about Jax cough, I know how frustrating coughs can be, and to not be able to sleep, I just feel for you! I want to get together so you can look at shirts and pick a couple for your auction. Let me know what works for you.
Aww, it makes me want you guys here again now!! I love the picture of my Peanut standing up. I don't think I have a picture like that. I saved it. Thank you!
ReplyDeleteAwesome pics. and you're so right about your boys, stinkin' gorgeous!
ReplyDeleteI love how they are all asleep together. Precious!
OK... bring on Miss Z's party!!!
Those are great photos! Love the one with the boys all in one bed. Praying that Jax won't need that long surgery.
ReplyDeleteLOVE the close up picture of you and sweet Jaxson! SO SWEET!
ReplyDeleteMore beautiful pictures...enjoyed each one of them. I especially liked the one of you and Jax on Alice in Wonderland, did you see his face? He's definitely thinking something very specific there. Adorable.
ReplyDeleteWell I totally understand why you felt the way you did coming home, who wouldn't after all that fun!
I am so far behind. I just looked at all the pictures. It looks like everyone had a good time at Disney. So happy it worked out for Jaxson!!!!
ReplyDeleteAdventure....just what every special kid & family need. I'm SO happy for you. Sweet memories to have forever.
ReplyDeleteLove, Bree
Glad you had a good time! Happy to hear that Jax did so well and no ER trips!
ReplyDeleteI would love to go to California...but man, it's so far away from Michigan.
Love the pictures! Especially the one of Carter and you on the rollercoaster. So glad you had fun!
ReplyDeleteThe pictures are AWESOME! And yes you do have handsome boys!!!! Thanks again for sharing with us!
ReplyDeleteGood luck with the coughing and airway problems. I hope you can figure out a way to resolve it without surgery! Thinking of you and Jax!
looks like you guys had a great time at Disney! Hope you get some answers as to the coughing problem he's dealing with :( and that you can get some sleep soon!
ReplyDelete