You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst. Usually they say right away "Evie's ok," and then continue on. Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse.
Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port. Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in.
The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in? I said, well, I'm at work in Boston, and could go over in 40 minutes, but does the nurse know how to put the button back in? The answer was no.
And so I told the nurse I would walk her through it if she was game. She was, and I told her how to prep for the insertion of a new g-tube button.
For those who are interested, the kit comes with a small syringe. After inflating the balloon to make sure there are no leaks, you draw up 2.5 mm (or whatever the kit says for your size) of bottled water into the syringe. Then you put sterile lube on the tip of the deflated balloon for smooth insertion.
|A pic from one of my earliest posts about learning to g-tube.|
Once she was prepped, I wished her luck, and stayed on speakerphone. I heard them hold Evie down as I instructed, and then promptly heard Evie hollering and crying. The nurse inserted the button successfully, but then couldn't get water to flush through the tube as Evie was straining and crying. She wasn't in pain--she was just angry at being held down. I gave the nurse permission to skip the water flush this morning and just to give her plenty of chances to sip water from a cup. Evie got lots of hugs from her 1:1 aide after that, and calmed down.
Crisis averted, I went back in the conference room and tried to catch my breath as I jumped back into my meeting at work.
Hours later, I am wondering to myself if I will need to start a campaign for all of the school nurses to have g-tube training. Tomorrow, I'm going to be marching to the substitute nurse's office to train her and train Evie's 1:1 to do g-tube for her. Knowledge is power, and in this case, knowledge saves a trip to the ER and a possible surgery to re-insert a g-tube button if the button is out too long.
I salute the nurses who taught me how to do this myself. I salute all the caregivers out there who have become medical experts because they care for someone so deeply that they learn all sorts of unheard of skills in the common population. I salute all the people in our lives (grandparents, friends, teachers, babysitters) who haven't been afraid to learn how to handle Evie's g-tube, and have jumped in and learned how to help.
This may prompt someone to ask "When is Evie going to be off the feeding tube?" Well, it's a very slow journey, which can be slowed down if Evie feels like we are forcing her to eat, but she is much closer! Today in feeding therapy, she put a puff all the way in her mouth for the first time! She moved it around her mouth and then spit it out, but she didn't gag or cry, which is HUGE. Thanks for cheering us on!