Throw Back Thursday - May 1

Remember that one day when Lexi didn't throw 73 curveballs at her medical team to keep them on their toes? Yeah - me neither.

Started out the day finding out they had to put her on oxygen last night - more than likely it was more of a ventilator issue that the nurse didn't know how to fix, but still.

Then I was told she wouldn't be able to go home until the week of Memorial Day because it would take about two weeks to get everything figured out and then the pulminologist would be on vacation and wasn't comfortable sending you home while she was gone. Dr. G laughed and said then we better get her out of here before your vacation then and she fast tracked the timeline... VERY TENTATIVE  discharge date is May 14. 

Why so tentative? Well one, because it's you and you don't like doing things by other people's plans. And two, all this HAS to happen before then:
-- switch home health providers (insurance nightmare)
-- select home health nurses
-- train home health nurses on your case and vent care
-- Dad has to get caught up on trach care training (in the middle of graduation insanity they want him to come in as much as possible. HA)
-- we both have to take a ventilator care class
-- get new equipment
-- room in with new equipment
-- home inspection to make sure it's a safe environment and we have sufficient electrical support 
-- relocate all of your stuff back up to your room (no I don't like the idea of you being upstairs, but it's better than the alternative...)

And in the middle of all that, ENT wasn't thrilled with the placement of the new trach after it's had a couple days to settle in so she switched it again - initially to one that we would have to custom order, but then said let's try another option first. So now instead of a neonatal size trach you're in a pediatric size; she's guessing that your skin webbing around the neck makes the trach path longer than a neonatal size will work with, which is causing it to not go into your airway enough, making it look shorter. So we're on a pediatric, longer trach now to see how that does. ENT also laughed when she heard end of the month so everyone is on board with getting you out of here in the next two weeks. Go team go!

So they made the call to the new company to come get started with all of the intake information so that we can get the ball moving on home health (supplies, equipment, nursing and training) and they came by right before the trach change issue.

And you didn't get a morning nap because of all of the excitement
And Mama didn't get lunch until she was driving home.
So between 10:00 am and 1:00 pm you went through two trach changes, three X-rays, one bronchoscopy, two new faces being introduced, vent settings being adjusted, and you got new boots because your feet got to fat for your old ones!

At least you got a good nights sleep last night... Oh wait, no you didn't. You stayed up late again, woke up early and barely got a nap before all the insanity started.
{Follow up from above} the alternative to you moving to your room upstairs is having a nurse on duty watching you sleep with me and Daddy trying to sleep in the same room - not happening. Since we're coming home with a ventilator we have to have 24/7 care, which means our family is fixing to do a LOT of adjusting! It might drop to just at night after everything gets settled in if you do well enough during the day to just be on the trach collar - we'll see!

So you get some rest while the rest of us try to move mountains and make stars align so you can come home!