Thanksgiving, snow, and feeding tube issues

 It has been very nice to spend this kind of time with my husband and kids. In addition, as most of you have been experiencing, our area got hit with a blizzard and everything is pretty much shut down. We “only” got  a little over 20 inches of snow, but just north of us in Erie  they had well over 40 inches by now. This includes the small town where I teach. They’re forecasting for more snow at this point! 

Thanksgiving was nice because Ellie didn’t have to focus on quantity of food. Since she does continuous feeds, she was able to eat only what she wanted. She really loves the gluten free pumpkin pie dessert that I make and has eaten quite a bit of that over the last week. 

On Friday, we got out the Christmas decorations. When I say “we” I mean Mike hauled up all the bins from the basement and carried them back down.  It was a nice day to decorate with the snow falling outside. Ellie was pretty tired that day, so she mostly just watched us decorate, but at least she was there with us. 

On Saturday, she told me she thinks her tube flipped again into her stomach. Which means nausea, stomach pain and her tasting formula. My first thought was to take her to the ER. However, our county is in a state of emergency and we didn’t want to risk the drive. All of the urgent cares were closed. Even if she got an xray to confirm displacement, no one is going to do that procedure on a weekend. We made the decision to message her GI doctor and wait until Monday to see what he says. I pray that this is something that can be done in Erie, because I don’t really want to take another trip to Pittsburgh. In the meantime , she’s been trying to eat by mouth but it causes a lot of discomfort as we know her food just sits in her stomach and barely clears from her bowels. 

Another worry is that her dr may want to start her on TPN  now instead of waiting(central line ). A central line brings a risk of infection and will require a hospital stay. I know it’s all in God’s hands and he will work it out. Worrying never gets me anywhere. 

Ellie has been enjoying all of us being snowed in. She spends most days alone in solitude so this has been a happy Thanksgiving break for her. Anyone who knows Mike knows that he cannot just sit inside and rest for any period of time. With this amount of snow, he doesn’t have much choice. Except for hunting twice , he’s been in with us. He and Ellie worked on some puzzles together this weekend and I can tell it made her happy to have the company. 

We still have Ellie’s ultrasound coming up in Pittsburgh on the 9th. This will test for MALS. Here is info on that that is :  median arcuate ligament syndrome (MALS, also known as celiac artery compression syndrome, celiac axis syndrome, celiac trunk compression syndrome or Dunbar syndrome) is a rare[1] condition characterized by abdominal painattributed to compression of the celiac artery and the celiac gangliaby the median arcuate ligament.[2]

That’s all for now. I will update when I find out the plan for her tube.