Waiting

For those friends and family checking in on how things are going we are patiently waiting. 

We checked in about noon and did the necessary paperwork. We ordered lunch which was a first for Ainsley.  Even though it's hospital food it's a big deal to be admitted to the hospital and not have to be g-tube fed! Woohoo!

Last night we decided to live dangerously and let Ainsley sleep with her brother and sister without her pulse-oximeter after she said over and over that yes 3 could fit in a Queen size bed (holding up 3 fingers and nodding, then no not 2). I have a friend whose trached son hasn't ever even had a pulse-ox so maybe it's okay for a night, but I did check on her 3 times.  Since she will be sleeping with a CPAP mask on from here on out this could be the last opportunity for a "sibling sleep over". I was torn but let her and she loved it and slept great. I had butterflies all night about today but slept better than expected, all things considered.

Last pic of the kids together with the trach? I hope.

It was great to see Ainsley was excited when it was time to go and she communicated with us what was happening (pointing at the nose for CPAP). She seems to have warmed up to the idea of getting the trach out but I am eager to see how she reacts when it really happens.

We brought some things to do and will need them. Apparently the plan is that we are waiting for Ainsley's ENT to be available in between or after surgery to do the decannulation. Who knows when that might be. It's nearly 4:00 now and we've done all the paperwork, seen all the nurses, residents, interns and Pulmonary team. Done the sticker book, lunch and Netflix on the Kindle (hospital TV sucks). I am nervous and this waiting is killing me. At least I have the blog to post to. That helps. I will try to post again once it's happened, with pictures of her "naked neck". The plan after decann is to use CPAP overnight and go home in the morning trach-less, assuming all goes well. 

See that?! Decannulation, it's the plan. 

WOW! 

I kind of never thought this day would actually come. 

Thanks for checking in on us.