Wow...yikes...gulp...Yippy.???

[drct1245]

The pulm appt today has me starting to get nervous... We put the cap on Ayden for about 5 min and she didn't see any signs of him breathing different, so we got the OK to cap!! Then she said to get in touch w/ the ENT b/c as far as she is concerned, she willing to sign off on the decan - provided he does as well w/ the cap as he did w/ the PMV (He was able to be on the PMV all day after 2 weeks) It's exciting and scary all at the same time. But I do know from this board that not all decans happen the first time, so I am expecting the worst and hoping for the best.

We shall see what the ENT has to say.

Oh we also had an EKG too today to make sure his heart is "happy"... haha (Basically make sure he doesn't have any pulmonary hypertension).

She also said that she wants him to get the synagis shot this winter, even though he is 2 and has had 2 years of it. She doesn't want him to get that bug after decan.

She thinks we could decan in about 3 weeks or so!! :eek: :woohoo:

[TommysMommy]

OMG! 3 weeks??? That is so exciting! Fingers and toes crossed it does "take" the first time around! Woo-Hoo!

[Hope]

WOW! How exciting! Prayers for everything to go well!
Hope

[hcs_mom]

That is so exciting! Lots of prayers that the first time is IT!

Jennie

[Isaac'sMomandDad]

Wow! Three weeks! That's awesome and scary all at once.

I didn't think you could get insurance to cover synagsis shot for more than two winters, but hey, maybe I'm wrong...

Fingers crossed for decann!!

Lara

[TommysDad]

Three Weeks! WOW! We'll be hoping all goes well, too:hug:

[aw82797]

wow how exciting, hopefully we will be discussing dacannulation at hunters follow up tonsillectomy appt on the 17th. Hunter also got the synagis shot for two seasons but we couldn't push it for more than that, he did get RSV during the last season he got synagis but it was mild thanks to the vaccine, no problems since though. good luck.

[kshell]

So so very happy for you guys. Natalie sounds so very much like Ayden, his story really gives me hope for her. Hope all goes well and we will cross everything we can.

Karen

[JWorthington]

Wow, 3 weeks - that is quick!! Keeping everything crossed this side of the pond:hug:

Juliex

[JacobKaden]

:eek: OMG Dawn, that is so exciting! I really hope it works the first time, sure sounds like he's ready!:woohoo:

[alizesmom]

That is great news. Praying we get to see pictures of a naked neck in 3 weeks. Karen

[lovemymak]

That is so exciting! I hope things turn out well for you all the first time around!:hug:

[Alethia]

Fantastic!! :woohoo: I hope that all this trach stuff is a distant memory by this time next year! :D

[Ainsley's Mom]

Oh my gosh Dawn that is amazing! You must be in shock. I hope all goes smoothly!

[KJKK8437]

Wow! Yay! Wow! Hooray!

[KJKK8437]

WOW! YAY! WOW! HOORAY! This is fabulous!

[Livi's_mama]

Awesome news!!!

[WeAdoptKids]

WONDERFUL, Exciting and totally breath taking all at once. We will be praying for the best possible outcome here in Northern Nevada. As for the synigis shot, Joseph had it till he was 6 years old....no problem. So everyone is different.

Hugs,
Roberta

[debvec]

that is so wonderful!!! Can't wait to hear how it goes!!!!

Amanda's mom, deb

[haltec]

Dawn - this is great news. I hope Ayden adjusts well to the cap. It took us several weeks to get Sienna to the point of sleeping comfortable with it. Do they want you to cap while sleeping? I'm always interested in the different doc opinions. Yay!

[drct1245]

... It took us several weeks to get Sienna to the point of sleeping comfortable with it. Do they want you to cap while sleeping? I'm always interested in the different doc opinions. Yay!

Hi Claudia... thanks for the info. I was originally going to PM you, however, someone else might benefit from a capping conversation. :) Our pulm said that she would be OK w/ decan if we could cap as few as 3 hrs in a row both during the day and during the night. I slipped the cap on Ayden last night and he didn't even notice - 2 breaths and he was breathing through his mouth & nose. :woohoo: I had him on just for 15 min, but he satted great and his HR was in the normal range... so keeping our fingers crossed. The hardest thing for us is the O2. Today we had the cap for a whole 1/2 hr w/out extra O2 and he seemed to do OK. But I really didn't let him "run and play"; he was sitting down.

So keeping our fingers crossed that everything continues to go smooth.

[haltec]

The hardest thing for us is the O2. Today we had the cap for a whole 1/2 hr w/out extra O2 and he seemed to do OK. But I really didn't let him "run and play"; he was sitting down.

So keeping our fingers crossed that everything continues to go smooth.

Hi Dawn. I am so glad that things are going well with the capping. Did Ayden make a lot more noise with the cap. Sienna was making noise without the cap, but she is much louder with the cap. I love it!
Is Ayden still O2 dependent? I was thinking that he was off O2, but your message made me think that maybe he isn't. Will you have to use a nasal cannula?

This is so exciting!!

[drct1245]

...Did Ayden make a lot more noise with the cap. Sienna was making noise without the cap, but she is much louder with the cap. I love it!
Is Ayden still O2 dependent? I was thinking that he was off O2, but your message made me think that maybe he isn't. Will you have to use a nasal cannula?

This is so exciting!!

Ayden uses a PMV all day long and makes lots of noise w/ either the PMV or cap. And is much louder too. :(:p To the point of telling him to shhhhhh.

Yes, Ayden is still O2 depentent, however, since going up to the mountains, it his requirement has been less. We are trying to get him to use a nasal cannula, but he hated it. I cut off the prongs that go into the nose and he will tolerate it - about every 5 minutes (when he thinks about it) he tries to take it off. But is much better w/ out the little nose things. :) I keep praying that he is like Alex (Whitney's son), who also lives in our mile high city, and when he got decanned didn't need O2!! (one can only hope!!)

Hopefully when we are home this weekend, we can really get him capped for a few hours a day. The nurses are a little nervous...