I barely had a chance to get used to the idea that Oliver wasn’t with us anymore when Lila started running a fever and my focus had to change. By Friday night she was sick to her stomach (huge red flags for FOAD kids!), and despite her insistence that she was okay, I called the metabolic specialist who suggested we take her to the hospital for fluids.
VLCAD sucks. I’m just going to come out and say it. Preventative, multi-night hospital stays with a 3 year old sucks. Begging and pleading with your kid to just please eat so we can go home really sucks. It’s draining.
She ended up being diagnosed with influenza in the ER. Having my dad experience serious complications from the flu 4 years ago has imprinted on me how serious the flu can be. We get our flu shots every year, but hadn’t gotten ours yet this year. Luckily Lila’s symptoms were mild and any other kid would have been fine managing at home with the symptoms she had. But, because of her VLCAD diagnosis she needed to get on some extra fluids until she could eat again. The thing is, she is just not herself in the hospital, so I walk this tight rope of begging to take her home to see if she will eat vs. staying in the hospital for multiple days with a kid who is totally fine but just doesn’t want to eat because being in the hospital is one of the worst things ever!
On top of that, there was a labour strike within the school system which meant schools were closed and kids were supposed to be doing online work. My husband is a mechanic and this is a busy time for him (plus he just recently started this job), and truth be told, we really need the income that his job brings in right now. Me not working the way I normally would during the pandemic really took its toll on us. So I felt like I was in this no-win position…
Thankfully, we ended up getting the ok to go home on Sunday afternoon which was amazing. However, by Monday I was sick, and then on Tuesday my oldest fell sick. And let me tell you, influenza is not a joke. I scream this from the roof tops every year after seeing what my dad went through, “get your dang flu shot!” We had it mild and it’s still pretty awful. Plus, it could save a kid like Lila from spending days in the hospital.
But now, Thursday, Isabel is on the mend. I am feeling about 75% better and at least able to stay conscious for an entire work day.
It just feels like a lot sometimes. Life should only be allowed to dole you out one thing at a time. At this point, I’m not sure if I’m exhausted from fighting this virus or the emotional toll it all takes. In typical “Me” fashion, I chalk it up to me being somehow lazy and find a way to beat myself up about it.
I really struggle with Lila’s VLCAD diagnosis sometimes. We are fortunate that she has never had any symptoms and the two times she has been hospitalized, all of her bloodwork came back normal. But that throws you for a different loop as a parent. You have, on paper and what appears to be a “well” child who you are forcing to get an IV and blood draws and sit in an ER room for several hours. She was so freaked out after the IV that she wouldn’t even let anyone take her temperature under her arm. I’m still somehow hopeful that genetics will come back one day and find that her genetic mutations, both of which haven’t been seen before in any other VLCAD case, is actually benign. I don’t know if this is just me still being in denial because she always looks so well, or if there actually is hope. Regardless, I do all the things I’m supposed to… but I do worry sometimes that we are over treating her and making her scared of going to see doctors…
What I do know is that if I hear one more medical professional tell me. “All you have to do is feed her every 3 hours,” or “Just make sure she has juice when she’s sick,” I may just implode. Have you ever tried to “just” feed a toddler every 3 hours? or an infant? if they don’t want to eat, there is really no forcing them, but you as the parent have it in your head that if they don’t eat, the results could be deadly. There is no “just” doing anything with a toddler. There is not “just” a trip to the hospital for fluids. It’s an ordeal. Toddlers have this amazing way of making everything epic, for better or for worse!
When I explain the protocols for Lila’s illness to people it never sounds that bad, but it can really be an emotional challenge. While we were in the hospital, I pulled out her medical file that we carry everywhere in case she is hospitalized… in it, I had records of all of her feeds when she was an infant. Every 2-3 hours around the clock. I remember being so stressed when she wouldn’t eat after 3 hours, fearing that she would go into a metabolic crisis. And now, if she is sick and won’t eat every 3 hours, or worse, if she’s sick to her stomach, I get all of those same feelings. It’s hard trying to understand an illness as rare and complex as VLCAD. I don’t know if I need to be as stressed as I am about Lila… I hear mixed messages. From our doctors I hear she is “very mild.” And yet that doesn’t change her illness management. From the FOAD community, many of whom have lost children to these disorders will say there is no such thing as mild FOAD; that they can all lead to metabolic crisis. I’ll hear “all she needs is some fluids when she’s sick and to eat a heart healthy diet.” But what that actually looks like is much more complex (at this time in our lives anyway).
I’m eager for the day when Lila can tell me more clearly what is going on with her body and how she is feeling, and when she can understand why she needs to be eating and drinking. But at this time, it’s a struggle. I always am hesitant to share these feelings because I often get brushed off by people saying, “well at least she is well,” or “it could be worse.” And of course it could. But it also doesn’t mean that this doesn’t come without it’s challenges too, and I wish that could be acknowledged sometimes.
I’m going to leave on a high note. Here are my kiddos in their handmade halloween costume. One Yoshi and one zombie cat (which was harder to make than Yoshi)!
