I secretly congratulate myself after we arrive at our winter vacation destination. Preparing and packing for this road trip seemed to go so easily this time. Almost too easily.
I have a packing list on my computer that I started when my now adult boys were little. After Austin was born, that packing list became the saving grace for us to be able to leave the house for extended periods of time, confident we had everything including the kitchen sink. Austin's list is twice as long as mine and my typical kids'.
While I'm digging in the bag for his 3 inhalers, preparing to count his twelve breaths as I administer each one, his dad walks in and casually asks, "Hey, where did you pack that white stuff?"
He's referring to the main fat ingredient in his custom, ketogenic feeding pump recipe that he's on to keep him in ketosis for partial seizure control. It's a medical grade, emulsified MCT oil. You can buy it off the internet, but as with all "medical" products, the markup is 8-10 times what it should actually cost. Thankfully it's something insurance pays for and ships to us through a medical supply company.
And at the moment it is currently sitting in our home pantry, miles away.
Dagger in my heart.
That's what that niggling feeling was when packing had seemed too easy.
I stay calm (for once - work in progress) and start problem solving. I have access to the nutritionist's keto calculator and permission to adjust Austin's recipe whenever necessary (and thank God, because sometimes I run out of an ingredient and need to substitute something else temporarily - the only risk being that he may not tolerate the new substitute ingredient.)
Thinking about what might already be here in the cabin, my first thought is to try olive oil until I remember they sell regular MCT oil in the store to be added to coffee and stuff. I add the ingredient into the keto calculator and come up with an equivalent amount to satisfy Austin's diet parameters. We cross our fingers and make the recipe with regular MCT oil hoping he will tolerate it until we can get our home supply shipped overnight to us. (Thanks grandad!)
Onward and upward.
After I give him his inhalers, I brush his teeth. He usually ends up with a mouth full of toothpaste-y secretions no matter how little I dab on the brush.
I flick the switch on the suction machine to get the extra foamy saliva out of his mouth so he doesn't try to swallow or inhale too much of it.
The motor sounds sad and lifeless. No problem. I had forgotten to charge it in the hotel the night before, but I can charge it now and also run it while it's plugged in.
I lift the side pocket flap. No charging cord. I lift the other side pocket flap. No charging cord.
Another dagger in my heart.
How could this be happening? I have a list!
********
In this past year of 2020, the year of Covid-19, stay-at-home mandates, social distancing, masks, protests, rioting, and election turmoil, Austin lived his best life so far.
He's had virtually no school (5 days for the entire year), almost no nursing care (the occasional visit here and there when we've asked), no therapies (until this last month when we restarted the outside-of-school options).
But he's also had no sickness, no hospital stays, and the best part, no expectations, and no obligations.
Austin and I have become the best of friends. We are together most of every day.
I provide all of his care during the weekdays and share his care with my husband in the evenings and on weekends. Whenever the big boys have been home for holidays, they help out too. His grandad has also spent a few hours here and there watching him if I need to leave the house for an appointment during the day.
I've learned for now, that unless we need a break to go on a date or out with friends, I don't really want a regular nurse schedule, or the stress of interviewing, or the stress of nurses calling off at the last minute. I realize there may be a time we need a regular nurse schedule again, but right now I actually love not having strangers in the house all the time. It's almost like we are normal.
I also love not having school. No rush to get ready early in the morning. No anxiously anticipating if they are going to call to have me pick him up in the middle of the day. No anxiety over him having seizures, aspirating, or getting sick at school.
And best of all, no dress up/theme days for me to feel guilt over not participating, no school supplies I have to feel guilt or stress over providing or not providing, no anxiety over bus driver or nurse schedules aligning with our own personal schedule of doctor appointments, sickness, or vacations.
This year had been a breath of fresh air.
Weights off shoulders.
Priorities exposed.
New lists written.
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