Even with a background in healthcare, I still have a laundry list of things I have learned the hard way, cringey moments, and times where, in hindsight, I really could have played it smarter than what I did. So here are a few scenarios that will help remind you to run your own quality checks before you do the next thing, hopefully spare you some grief and a whole lot of ugly crying - all to my everlasting embarrassment and shame. You're welcome.
You should probably make sure the oxygen tank is turned ON, and do it BEFORE you leave the house.
When we brought Griffin home from his time in Salt Lake it was overwhelming to try and navigate life with an infant who was on oxygen, had a feeding tube, medications several times throughout the day, and still all the normal baby paraphernalia. Probably the worst of these at this point was dealing with his oxygen. He was still having pretty moderate to severe withdrawals from all the pain medications and sedatives that had to be used during his time in the hospital, he would desaturate immediately if we took the oxygen off for even a moment, and we lived in a two-story house with all the bedrooms upstairs and only one concentrator for home. So, when we would transfer him every night and morning between the two floors we would have to switch him from the concentrator - to the tank - then back to the concentrator to get him up and down the stairs, and we had to do it at lightning speed before his oxygen dropped too low. It also didn't help that they gave us the huge E tanks for this and travel, even though he was only on 1/2 a liter of oxygen (I had no idea about the m-tanks at this point).
If home was this stressful, you can imagine what leaving the house was like. I also had a perpetual and unrelenting fear that we would run out of oxygen while away from home. I was pretty much the poster child for hot mess at this point.
So, when his first follow-up visit with his pediatrician came up in a few days I was already beyond frazzled and working off of little sleep. We started getting ready to go an hour and a half in advance (the office is 15 minutes from the house for perspective) and we methodically got everything switched over, hooked up, and loaded up. We were still 10 minutes late and I was beside myself. My husband, however, was rocking the whole thing like a pro and as if he had done this a million times, with the oxygen tank in one hand, the oximeter and feeding bag slung over his shoulder, and pushing the stroller with his free hand, all cool as a cucumber. I thank God for him every day...ok, most days. The important part was we made it. We started the visit and everything was going smoothly until it was time to check his oxygen saturation. Inexplicably he was saturating at 88% no matter what we did, and what little composure I had left went out the window. We finished the visit discouraged, I was a soppy snotty mess, and went home.
My husband has taken over completely at this point and gets the baby and all gear into the house, and beginnings getting everything switched back. He changes the oxygen from the tank we were using back to the concentrator when I hear, "BABE!" I come running into the living room wondering to myself what else could go wrong today, and my husband announces "the oxygen tank was never turned on."
*Insert very long, horrified pause.*
Silver lining - it's pretty good he was able to maintain 88% on his own at the point. Not so great was sending a MyChart message to his doctor explaining the previously inexplicable and worrisome problem was not a problem at all but parental user error.
I swore I had triple-checked that stupid tank.
Moral: quadruple check that the tank is turned on, and watch out for the oxygen ghost in your house. They can't be trusted.
Make sure the feeding tube is not stuck in the couch or highchair BEFORE you stand up.
You are not superman, DON'T try to change the feeding tube by yourself with an infant who is just not gonna have it today. Especially if you're new to it.
Make sure you have enough diapers - you never know when a store is not going to carry them and you will be completely out of luck.
Make sure your feeding tube ACTUALLY works before placing it.
Make sure you pay attention to the rate vs dose feature on your feeding pump BEFORE you try running it overnight.
Make sure you've got something to secure your kid's feeding tube and keep it out of their grasp as much as possible BEFORE bedtime.
Make a checklist or divy the medications up in baskets.
Make sure you label each individual medication in it's syringe BEFORE you walk away.
Make sure the feeding pump and/or oxygen source is RIGHT BY your child at all times if your house is crazy and/or you live with anyone clumsy.
So there you have it: the beginnings of my novel about things I have learned the hard way, usually while crying. Go forth empowered and better prepared!
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