Mitochondrial Disease Awareness week is over, but at our house it is never really over and there are a few more things I wanted to share here that I posted about on Facebook last week.
Mitochondrial Disease is an INVISIBLE disease, which means you generally cannot tell anything is “wrong” with K from the outside. When you pass us in the grocery store or sit across a restaurant from us, K looks fine usually. If you spend a whole day with us, though, you’ll notice differences. Meds and checks for glucose and oxygen and tube feeds and oxygen are all part of her daily life, but maybe not a part the outside world sees at first (or second or fifteenth) glance.
While K looks good on the outside, this is some of what is going on inside of her:
So while she LOOKS good every day, it takes a lot to keep her looking that good. To keep her looking that good, this is what our house looks like:
There are medical supplies in every room except for K’s brother’s room. There is an IV pole and oxygen tanks in the living room; shelves in the pantry for formula and feeding supplies; cabinet in the kitchen for meds and supplements; an IV pole, pump, oximeter, and related supplies in her bedroom; compressor and more meds/supplies in the bathrooms; tank filler in the hall; drawer of miscellaneous supplies and meds in our room; dedicated storage shelves in the game room…and so on. This is what it takes to keep our K running!
Even with all we do to keep her running, we still have 3 types of days in K’s life and they look like this:
Type 1: This is a GOOD day.
K feels really good, her body is maintaining pretty well (with all of the normal supports), and she can play and do many normal things. If the weather is not hot, she can play outside. Weather-permitting, we could go to the zoo or museum (though she would need to ride in her wheelchair to prevent exhaustion or a crash) or get together with friends or she could go to a baseball game with her mito pals and even run the bases!
Type 2: This is a NOT-SO-GOOD day!
A not-so-good day means extra interventions. K might need to be on oxygen and/or continuous feeds and/or hooked up to a Farrell bag to allow her stomach to drain all the time. She may need Zofran to control vomiting and other PRN meds or breathing treatments, too. She probably needs regular ketone and glucose checks. She might have a mild illness that causes all of this trouble or she may just be having a not-so-good day because she really enjoyed a good day the day before and is paying the price for the fun she had. A not-so-good day means she doesn’t have energy for playing or going out. She is probably on the couch or in bed and she feels crummy.
Type 3: This is a BAD day!
A bad day means that we can no longer manage K’s issues at home and have to go to the hospital. Her glucose is too low, her ketones are too high, whatever the situation it is no longer something we can handle with our at home meds or her GJ tube. This summer a simple GI bug put us in the hospital for 4 days because her gut shut down on us and she needed IV fluids and medications. Then we came back home and had about 2 weeks more of not-so-good days until her systems came back online and she was close to her baseline again. We don’t like bad days (or their aftermath)!
Hopefully, between this post and the previous one, you understand a little bit more about what life with Mitochondrial Disease is like. It is beautiful and fun and messy and tough and hilarious and sad…and in that respect, it is like a LOT of other kinds of lives! We never know what is going on in what appears to be a “normal” life, so we should try to be as gentle and forgiving as possible with one another as often as we can. The kid who hops out of her wheelchair when she gets to the park probably isn’t doing it for attention…she is probably conserving her energy so she has the ability to enjoy herself at the park! The family who gets out of the car in the wheelchair parking spot, but doesn’t have anyone who looks “different” in their group may have an invisible illness that affects one or more of them. The 3 year old still drinking from a baby bottle might be doing so because it is the only thing standing between her and a feeding tube (and yes, her mom knows it is a losing battle and when you say, “Oooh, looks like it is time to get rid of that bottle, Mama!” it will twist up her insides like you would not believe). The mom who always seems to be running late may have had to prep a feeding bag at the last minute because the one in the backpack burst or had to clean up her 8 year old’s bathroom accident on the way out the door. You just never know.
Kindness costs nothing, but means everything…especially when you are fighting an invisible battle. So think of K and her battle and be kind, as often as possible. It would make her so proud.