Many new people have entered our lives during the medically-stable period in K’s life. I know that a lot of the things I say or things that happen can be confusing for people who don’t have a frame of reference for how K’s body works (which is quite differently than how most people’s bodies work). I wanted to explain a bit for those of you who may not know her long history.
This past week, we were all hit by a stomach virus. It definitely hit me the hardest in the acute sense, but even though K only threw up once during the virus and she is no longer sick, it is still wreaking havoc in her body. This is common for K. Mundane viruses that are a blip for most people disrupt the delicate balance of her metabolic system and cause separate issues that can land her in the hospital. As a result of this virus, her stomach has largely stopped working (she can’t tolerate more than an ounce of fluid in there currently) so we are having to use her J-tube to give fluids/formula directly into her intestines. She’s also getting ketotic. Ketones are produced when your body burns fat for energy rather than glucose. Inducing ketosis to lose weight is a trendy thing right now (which is really frustrating for a mom who needs to access ketone related medical info on the Internet and can only find diet tips), but it is dangerous for K and indicates impending crisis if we cannot fix it. Ketones also change your blood pH and can make you acidotic which is especially dangerous in K’s condition. She is in ketosis in spite of constant carbs and sugar. Her ketone levels are a bit rollercoastery right now and we are working hard to keep it controlled.
In spite of all this, she feels pretty good for the most part. She’s not sick anymore. Her stomach doesn’t hurt most of the time, as long as it is empty or hooked up to drain. She’s not contagious. But we have to limit her activity level (to not further stress her body or kick her into higher levels of ketosis) and do some additional things to support her during this time that we don’t on a “normal” day. If we get to a point where we can’t bring her ketone levels down or keep her glucose up, then we may have to go to the hospital for fluids to get her over the hump. We never have a good idea of how long it will take for her to get back to baseline. It took weeks for her gut to turn back on after the last stomach virus, but it could also be a few days. We just don’t know. She tried to eat a few chips today and instantly declared it a very painful mistake.
We’ve been through this a million times during K’s life, it seems. It’s normal for us, in a way, but it can also be stressful. We are used to playing the game, but we are always aware that the stakes are high. It is one reason we live our lives a bit differently than most families. We avoid children’s museums or large crowds or really anything where small humans are encouraged to touch things, because the risk of infection is too high. It sucks the fun out of something, if you know you are going to be fighting to (hopefully) keep your kid out of the hospital in a few days. It’s also one of the reasons homeschool has been so good for K, she’s not constantly being barraged by infections. Even though we do our best to protect her from obvious risks, we don’t live in a bubble and sometimes the yucky stuff gets in anyway. We try to balance living life and preserving health the best we can every day. On days like today, the balance is just a bit harder to achieve, and we’re just happy to be able to manage things from home so far.