Life as a Leach

Abby's carbon dioxide levels are very high, and her left lung is diminished and not moving very much air.  Respiratory worked with her pretty much throughout the night, but there hasn't been much success.   She got another chest X-ray done this morning and the doctors are taking a look and discussing her now. They may move the tube back again like they did yesterday to see if that helps.  They will also most likely be going up on her vent settings.  This is all too familiar...I'm having flashbacks to the nicu!  So our specific prayer requests today are for her CO2 levels to decrease and for her left lung to start working better!   On a positive note, take a look at my girl! Her swelling has significantly decreased since yesterday! Thanks for praying for Abby!

So much has happened and changed in the last week...where to begin?   We saw our feeding therapist last Tuesday and decided to end therapy until after surgery.  This made me SO sad because Abby has made so much progress in the last eight months, but we really have to focus on getting as many calories as possible into Abby without burning more chewing higher textures.  We have met with a nutritionist several times last week and she gave us some good ideas.  Our goal now is 1,800-2,000 calories a day...typically kids eat 1,000-1,400.  The feeding GI (whom we love) met with us to discuss putting Abby on an appetite stimulant.  They had always been reluctant in the past, but now everyone agreed that this was the best thing for her.  She's been on it for 3 days now and we haven't seen much of a difference, but we are still working her up to the full dose.   Her weight was down at that appointment, and I was so concerned.  How could she be l...