Yellow-Orange Skin and a Trach Incident

Thursday night was rather interesting at our house. First, when I came home from work I told Fred that I had been noticing that Faith's hands and feet were looking very yellow-orange to me and I was wondering whether it was anthing to be concerned about. I first noticed it about a week ago and wondered if she had spilled some of her food and it stained her hands. But I kept noticing it for the next few days and I started thinking about what else could cause it - liver failure was what I was most afraid of, but the whites of her eyes were still white. Fred agreed it was very noticeable after I mentioned it, so I decided to call the on-call pediatrician to decide whether it was something that needed immediate attention or not. She called me back and asked questions about the color of the whites of her eyes (sclera) and whether she'd had a fever. Finally she asked, has she been eating a lot of sweet potatoes or carrots? I said, yes and she said it's "Carotenosis" a harmless condition that happens when a person gets more vitamin A than their body can process and so it deposits yellow-orange pigmentation in the fatty tissue just below the skin. She said we just need to stop feeding her orange foods for about a week or so until it goes away! It was funny because the doctor had that thought and then thought Faith was too old for those kinds of baby foods, but because I'm blending baby foods for Faith's g-tube feedings, it was exactly it! So one lesson learned for doing a homemade blended formula: take it easy on the orange foods!

Later that evening after we got Anthony and Faith to bed, we were watching the Virginia Tech Hokies football game and watching Faith on the video baby monitor that we set next to the TV in the evenings. All of the sudden Faith started crying, but it was a very unusual urgent and loud cry, not something we hear her do hardly ever. We watched her for about 30 seconds or so wondering if she would calm down on her own but as it got louder I ran upstairs to check on her. I was assuming her g-tube button was bothering her again, but usually that only makes her wimper in pain for a moment. So I turned on her light to find out what was wrong and she had her hand up at her trach, holding on the "artificial nose" when I finally saw that her trach tube was completely out and laying in front of her neck. I yelled to Fred, "She pulled her trach out" and while I heard him come running up the stairs I quickly got it back in, without even thinking about what or how to do it. She quit crying and was breathing just fine. While it is a really bad event that could have turned into an emergency, it was strangely comforting to know that one, she wasn't turning blue after it being out for 1-2 minutes (although she was just starting to get that dusky color kids get from crying too hard) meaning that her airway is significantly better than it was a year or more ago and two, it was wonderful to hear her cry so loudly. I guess with the tube being out she was able to get a lot more air past her vocal cords. I think it was a little painful for her with the trach tube stuck in front of her neck, but I think she was crying more out of fear. Of course it is another reality check that she could still have a serious airway emergency just because she is trached and we can't let our guards down thinking that she is such a typical 2 year old in other ways.

Things are a bit calmer this weekend except for me having a miserable sinus infection and everyone else just getting over being sick or still having a touch of something. Fred took Anthony to a birthday party today so I wouldn't expose Keshena's new baby (with his own lung condition, PCD) to my infection. On Tuesday we are going to meet with Dr. Pashley to discuss implanting Faith's Baha (bone anchored hearing aid) and I will try and post right away, especially if we set a surgery date before the end of the year.

Hope you all are doing well and getting ready for a yummy Thanksgiving feast!
Robin