We’re told Allie is doing very well post operatively for being 3 days out from surgery.  Sometimes it’s hard for me to judge because she is struggling considerably with pain that they’re having a difficult time controlling. They told us recovery will be hard work for her and to expect some complications and bumps along the way.  It’s pretty easy for me to focus on every little thing and worry, especially sitting at her bedside for hours and focusing on everything.  But looking at the bigger picture, there’s a lot of positive things happening.  ECMO was discontinued yesterday, the cannulas reomved, and she’s been stable since.  She remains on a vent and can’t talk because of the trach but she’s already had a CPAP trial today and lasted about an hour.  CPAP is where they set the vent to give a mild continuous pressure which helps keep the airways open but she was essentially breathing on her own during that time.  Her oxygen saturations fell by the end of the trial but this is still a great step forward.  This is a positive step towards weaning her off the ventilator. She was out of bed to a chair today and is able to support her own weight enough to stand and pivot.  The more she’s able to get up and get her strength back, the better her recovery will go.  One of the antibiotic nebulized medications had to be stopped because of an allergic reaction.  It’s an important medication so I’m hoping they have an alternative for her soon.  They moved her to a different room where there’s a window.  She can have a sense of day and night now and once she’s a bit more mobile will be able to see out the window which overlooks the road I walk back to the family house when I leave.  It’s also a bit quieter in the room she’s in now.  It’s still the CTICU but the area where people not on ECMO can be so it’s another step forward.  She’s hoping they will do a swallowing evaluation soon, she’s very dry and craving something to drink.  I’m not sure when that will happen. 

Today was the fundraiser at Masons and I hear it was a great turnout.  Thank you very much to everyone for making this event a such a success.  We continue to be amazed and humbled by the tremendous amount of support and the prayers Allie and our families are receiving.  And of course, the donations.  We are so grateful.