The first thing I do after the daycare kids go home for the night is crush a tablet of melatonin and add it to warm water.  My adult daughter, Kristi, has been having trouble sleeping at night.  I attach a syringe to her feeding tube, and pour the contents into the syringe along with an 8-ounce box of formula.  I flush with water, cap off the tube, and start getting supper ready.

While supper is cooking, I check the white board that lists the nightly care-giving tasks.  Kristi is in what we call a respiratory yellow zone, so that means we have additional cares that are necessary.

“Would you like some Tylenol?” I ask Kristi.

Kristi looks away from the television program she had selected and with the use of her ECO, she starts the process of scanning through her computer so she can voice her answer.

Bleep. Bleep. Bleep. . .

I lean on her wheelchair and zone out on the episode of Full House while I wait for her answer.

“Yes,” a computerized voice that I recognize as Kristi’s, finally responds to my question.

“Okay,” I say with a smile.  “Let me get it ready for you.”

I crush the pill and shake it up in warm water.  I go to the kitchen and serve up a plate of dinner for me, a small bowl for Kristi.  It has been two years since Kristi ended up in the emergency room with pneumonia.  That illness was the reason we finally caved and agreed to have the feeding tube placed.  Kristi was 28-years-old and 80 pounds, so her body had little reserve back then to fight the illness.  We had to force Kristi to eat, even though her spastic tongue and swallowing weren’t cooperating.  We prayed she wouldn’t aspirate on the foul tasting medications.

Kristi now weighs 100 pounds.  Unfortunately, because of the ease of the tube, we forgot the value of keeping Kristi’s chew/swallow skills functioning.  People like Kristi, who suffer from anoxic brain injuries, can easily aspirate on their own spit.  So now our goal is to get Kristi to take twenty bites at each meal.  I’ve only managed to feed her ten.

We are having carrot and potato casserole, something easy to eat, and I hope I can convince Kristi to eat just a little.  Eating should be fun, but for Kristi, it has become just another therapy session.

I pour the Tylenol down the syringe and begin the feeding task.  I stand near Kristi’s chair and give her a small bite while supporting her jaw.  After she swallows, I wipe my hand clean and take a bite of mine.  I shovel in at least three more spoonful’s before giving Kristi another bite.  The television program keeps us entertained as I go back and forth from my bowl to hers.

I’m pretty certain that she’s only taken five bites when I say, “Debbie is going to fire me if you don’t eat more than this.”  Debbie is Kristi’s primary caregiver.  She is also the one that has made my parenting duties manageable.

Kristi looks over me, too tired to roll her eyes.  I laugh and hold the spoon to her mouth.

“One more.  C’mon Kristi.”

Kristi stares at the TV screen, and drops her mouth slightly open.  I spoon a small bite of food inside her mouth, most of the food tumbles back out.

I collect the dirty dishes and towels, and bring them to the kitchen sink.  Kristi uses her communication device to set up a game of solitaire on her television screen.

Bleep.  Bleep. Bleep . . . the ECO scans across the row of cards.

“Okay, are you ready for your nebulizer?”

This time Kristi looks at me, opens her mouth and forces a sound.  I can tell by the look in her eyes, she means ‘yes.’  She does that sometimes, especially when she’s starting to get tired.

I fill the two nebulizer canisters and unwind the tubing.  I put the mask on Kristi and start the machine.  A soothing hiss confirms that the treatment is working.   A ‘ding’ interrupts Kristi.  She switches her computer screen to her Facebook page and clicks on her messages.

I go to the white board and check off the bites, the nebulizer treatments, log the time I gave Kristi the Tylenol and review the rest of the cares that still need to be done.  It’s impossible to remember everything.  Each one of the items is so important.  I never want to watch my daughter struggle to breathe again.

Next care up is the cough assist treatments.  Those are always a hoot.   I pull the four-foot hose from the wall clip and attach the face mask.  I connect the hose to the machine that is programmed to force air in and out of Kristi’s lungs in a specific pattern and strength for her needs.  The fun begins.  I press the mask and watch Kristi’s mouth widen and open like the Jester’s.  When the air sucks out, she gets a total fish-lips look.  I mimic her actions and we both start to giggle through what is sometimes an uncomfortable treatment for her.

I get the inhaler, attach the mask and spritz two doses of medication, counting the seconds needed for the medication to work.  I crush the next set of pills and add them to warm water.  I pour them into the syringe, along with another box of formula.

Kristi switches over to her phone using her ECO.  She searches for her brother Ryan’s contact information.

Bleep.  Bleep.  Bleep . . .

When Ryan connects via Facetime, I lean my head next to Kristi and wave.  I have a few minutes, so I leave Kristi alone to talk with her brother while I go to the basement and grab the basket of laundry that needs folding.

At 8:00pm I start the bedtime routines.  I separate the capsule that holds Kristi’s sleeping medication and pour the contents into water.

“Do you want cough medicine?”

I add liquid cough syrup to the cup.

“Do you want ibuprofen?”

I crush and add that to the cup, cover it, and shake it up.

“Oh yay!  It’s time for teeth!” I say with a smile.

I grab the spin brush from the counter and add a dab of paste.  I pull Kristi’s cheek away from her teeth and attempt to scrub at each tooth.  Paste and spit splatter when I readjust to get to the other side of her mouth.  We both giggle as I realize I’m brushing the outside of her cheek.

I start removing shoes.  Ankle-foot braces.  Hand braces.  Eye-glasses.  I inspect Kristi’s skin for sores.

I manually tilt the wheelchair, remove the knee blocks and one of the lap belts.

I summon Kristi’s stepdad Andy to transfer her to her bed.  Our lift is broken and lifting my daughter is a task I can longer do.

I adjust Kristi’s head so she can watch the TV while I finish up her cares.

I clean the g-tube site, give Kristi eye drops and face cream.  Her lips look dry, so I wipe away the dead skin and apply some Blistex.  I dress Kristi in fresh pajamas and a clean pair of socks.  She likes her socks.

“Everything okay?”  I ask.  Sometimes things like half torn toenails stuck in socks, an itchy back, or the diamond of her ring digging into her middle finger need to be addressed.

Kristi looks to her right, to communicate a yes.

I carefully position Kristi for rolling over.  There is a hole cut out in her mattress pad for the protruding g-tube apparatus.  I tuck her arm and shoulder into her side and position her flailing legs for a smooth roll.  Once Kristi is on her tummy, I gently pull her head back towards the TV while I finish positioning her arms, hands, legs and feet.  I take one last look at the white board and check off the rest of the tasks.

I pull the sheet and comforter over her body and snugly through the side rails.  I turn on the humidifier and sound machine.   I plug in the chargers for the ECO and wheelchair.  I throw the laundry down the chute, clean up the last of the equipment, and take the garbage out to the trash.  I turn off the TV and turn on the sound machine and baby monitor.

“Goodnight Kristi.” The sound of night crickets quiets her room.  I bend over with a smile and give her a kiss. “Love you.  See you in the morning.”