Club Med - Day 13

There's a light at the end of the tunnel. I thought I'd update more frequently, but doing it from my tablet is quite cumbersome.

Using the extra tubing to blow steam out the vent hole of the mask.

 

 

 At the end of last week there was talk of sending her home on Tuesday. Hubby and I were gearing up to fight that tooth and nail. One of the very few times we thought a short stay was not the answer. They said if her PFT's were up they'd send her home on Tuesday. Well, her PFT's were up (102% Yay!) but she still needed a clean out. So she has a gastrografin enema late Tuesday afternoon. That evening they changed her sheets so I figured we were at least staying another night. But no one ever exactly said when they were sending her home. So I was constantly on pins and needles. Then Wednesday the PA asked if Victoria was going to some of the activities that day and mentioned one going on the next day. So I figured we were staying those two days.

She liked the Princesses but only from afar.

Victoria loves blowing bubbles at the carnival. 

  I wish they'd be more explicit, but I was afraid to ask for fear the answer  was no. Then Thursday afternoon one of RT's commented 'I heard a rumor you were going home today'. What!?! Eeeke! What does he know that I don't know?  Is he joking with me? What's going on? So when the nurse came in at 6pm to do Victoria's IV I asked her about what he said.  She said as far as she knew Victoria was cleared to stay through her surgery.

Apparently at the RT team meeting they said all of the CF kids were going home that day.  There were only 3.  From what I saw only one went home.  The RT came to explain and apologize. Say that yes, that would be a cruel joke to play and no he'd never do that. I didn't really think he would. He's very sweet and lots of fun. Certainly one of my favorite RTs and I've been sad he hasn't been treating Victoria at all.   Our least favorite RT has been treating Victoria the most frequently.

Breaking the rules out in the garden to blow bubbles!

There's been all sorts of new tricks, techniques, equipment, and rules with Respiratory Therapy this stay. Victoria's favorite is the acapella. It be wonderful to bring that home and have that as an alternative chest therapy particularly for travel or long days away from home.  A simple lightweight device she can take in the car instead of lugging the huge vest or wearing my arms out doing manual therapy. It takes far less time too!

Working her new Plasma Car!

Victoria now owns her very own plasma car. Thanks to her Mimi and Papeet. It's a fantastic toy.  She terrorizes the floor during even numbered hours and bothers everyone else during odd number hours.  ;) Riding down that ramp is her favorite activity. Even if it did concern the receptionist across from the library when she did it during PT - wearing a helmet - supervised by her Physical Therapist and both parents. I wasn't worried.  But she still felt the need to talk about it to the people in the waiting area.  And to comment to us when we went back to the library after PT without the plasma car.

Made a crown with a beauty queen.

Surgery is scheduled for Monday. I'll probably update again when we're home on Tuesday.