Back in the Groove

Well, it's been a week and a half since we came home, boy time flies! I was settling into a nasty cold when we were discharged, so I was pretty much out of commission last week, finally feeling better now thank goodness.

Before we left the hospital the OT dropped in to see how things were going with Taylor. We hadn't been working on the thickened fluids by mouth because she was so congested from her cold that she couldn't breathe with a bottle in her mouth. The OT thought that it was better to play it safe for the next couple of weeks before the FEES study to continue with 100% tube feeds. So that's what we've been doing since we got home, and tomorrow is the big day, FEES study (Fiberoptic Endoscopic Evaluation of Swallowing) at 8:30am. Of course the city is hit with snow and bad roads right now, so it's going to be an adventure to get there on time in the middle of the morning rush hour. Sigh.

Since we got home Marissa has been quite interested in the whole tube feeding process. She told me that she wants to be my special helper, what a sweetheart. She likes to press the buttons on the pump. She knows how to turn it off when the feed is done. And she knows how to restart it when it beeps with a flow error. She gets quite annoyed when I beat her to it, she likes to do it herself. She's also very interested in flushing the tube after a feed finishes. We need to flush the line with water from a syringe after each feed, so Marissa is right in there wanting to help. She puts the syringe in the tube and flushes the water through, and she's very proud of herself every time she does it. I first let her do it last week one day. We were sitting at the dinner table while Taylor's feed was pumping through, and Marissa asked, "Mommy, is it time for me to milk Taylor?" Trying not to laugh I reminded her that it's called flushing Taylor's tube. Funny girl.

Going to call it a night now, early start in the morning to make it to Children's on time. Will update once we have news from the FEES study. Hopefully good news.