I had big plans for today. I was going to bring Myra to work with me to get some paperwork done. We were going to meal plan and grocery shop, then cook. Heck, I was going to take a shower!
Note: I'm not posting this to whine, but people often ask what is FPIES like? Is it really that bad? Why do you need to vacuum my house before Myra plays here? Even though this is about more than a crumb, that's all it takes.
Remember that yummy, three ingredient pudding recipe I shared last week? Myra loved it. She gobbled it up and made a big, fun mess for breakfast. Usually, at nap time, I put her in her crib wide awake and she puts herself to sleep. Well, that day she was pretty noisy. I thought that was odd, but just let her work it out. When she started really crying, I checked the monitor to make sure she wasn't stuck or anything. Not stuck, but she was clearly rolling around in a bunch of vomit. I'll try not to get too detailed, but it was disgusting and smelly. I ran in there, grabbed her, and got her in the tub. She was happy and playing like usual within minutes. I wondered about the avocado because we don't give it to her often. Even though we did a full trial of it, avocado seems to trigger her eczema so we're pretty conservative with it. I heard of that easy recipe and thought it sounded like a great way to work avocado back into Myra's diet since there are so many health benefits to it. By the timeframe from putting her down for her nap to when I went in there (not long), I guessed she "only" threw up once or twice. Compared to 5-6 times for her previous food fails, I was optimistic it was a fluke or a stomach bug or something and tried not to panic about losing avocado from her diet.
She bounced back quickly, drank a bottle, and took a good nap. She slept fine that night, and everything went back to normal. Trevor was gone and I never got sick, but I don't actually get sick often so I wasn't terribly surprised. Trevor and I agreed it very well could have been a virus of sorts and we should give avocado another try. I planned to wait a bit just in case, but last night I asked Trevor if we should just do it and get it over with. I was assuming it would be fine and I could stop wondering.
The rest of this talks about vomit, there's your warning.
So, this morning I mashed up an avocado and fed it to Myra as a dip with some Cheechas. She wasn't so sure, but ate enough for me to be confident we'd know if avocado was bad news or not. A couple hours later, she started getting whiny. And clingy. And she even gave me two big, long, cuddly hugs back to back. She'll give me a hug if I ask for it, but she never volunteers hugs like that. Then the raging drool and cough-y hiccups started and I knew what was next. Again, I'll try to spare the details, but it was bad. At the time, we were sitting on the kitchen floor together so I just held her while her puke went everywhere. She had just had one of her Neocate Splash "juice" boxes (orange-pineapple flavored hypoallergenic Boost type drink) which, of course, smelled all kinds of disgusting as vomit. I asked her if she wanted to take a bath, she loves baths, and through tears she said and signed "bath." I left the puke on the floor to deal with later.
I got her in the tub with plenty of bubble bath and hoped that, like last week, the worst was over. As they say, "you can wish in one hand and..." I was wrong. More vomiting in the tub accompanied by lots of crying, whining, coughing, thrashing. Vomiting is never cute, but these "GET THAT TOXIC GARBAGE OUT OF MY BODY RIGHT THIS INSTANT" vomiting episodes are scary to watch. (If you're curious how these kids change during reactions, here is a great video showing what it's like.) I got her out of the tub, she wanted nothing to do with clothes and was all kinds of upset, so I didn't fight it. I laid towels down on the couch and tried to get her to relax with me. It wasn't too long before I could sense more vomit coming, so I took her back to the bathroom and held her over the tub while she puked and coughed and cried. At this point, I was contemplating taking her to the ER. FPIES kiddos can, and often do, vomit to shock. When they start vomiting, they need IV fluids. If they get too dehydrated, it can be very difficult to find a vein to give them fluids. I was able to get her dressed (I couldn't decide if she'd be hot or chilly, so I just picked one) and I had to go to the bathroom so badly I couldn't hold it. I put her down on the bathmat and she passed out (the falling asleep kind) as she cried on the bathroom floor. I debated just leaving her there to sleep, but I couldn't do it. I picked her up and brought her to our bed (there's a first!) because we have a mattress protector so I didn't have to worry about a mess. She woke up and wasn't happy about it. I calmed her down again and she fell back asleep but I was in a horribly uncomfortable position and didn't dare to move. I had my phone and water, but that's it.
Trevor got home from class and cleaned up the vomit (bless his heart) then brought me some throw pillows so I wouldn't end up in physical therapy (seriously, I don't even know how I got myself in that position). Myra rested for a while, but didn't take a "real" nap. When she woke up, I asked if she wanted to go see Daddy and she perked up. She drank water and ate Cheechas and Kix while lying on the couch with Trevor. I was able to eat something and change clothes (again). That was essentially the end of the drama. From all I've learned about FPIES, these reactions really wreak havoc on their guts, so I'm sure she's still not feeling the greatest. She had a small supper and two small bottles, plus more water, so I think she'll be okay as far as hydration goes. Her demeanor bounced back quicker than one would expect, but after the crisis mode part of a reaction, she's seemed okay for the most part. We haven't had an acute (vomit) reaction in over a year, so I wasn't sure what to expect. Here's hoping tonight goes well!
I guess this is a humbling reality check that Myra hasn't outgrown her FPIES, we aren't exaggerating symptoms, and all these precautions are necessary. Trevor and I both admitted to beating ourselves up a bit over it afterwards. Of course it was the avocado. We were skeptical all along. I didn't get sick after she was last week. The timing of the vomiting fit perfectly. But, we needed to be sure and it certainly could have been just one of those random things, too.
So, no more avocado and I will shower and get my work done tomorrow.