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| Good Night. Sleep Tight. Going to fight another EoE fight tonight. |
As Halloween approaches, our children are exposed to all sorts of Halloween frights. Spooky decorations. Spooky cartoons and movies. Spooky costumes. Spooky stories. And all this spookiness may or may not result in a nightmare or two. Fears of monsters and ghosts and goblins haunting the dreams of a child.
It’s made me wonder how we sleep at night. For some parents, they are virtually unaffected. They tuck their children into bed with wishes of sweet dreams. Some parents eventually go on to bed themselves to get a good night’s rest, enviously uninterrupted.
For others, they don’t have it so lucky. Their children may suffer from night terrors and nightmares. Their children may just be poor sleepers. And other parents, like us, have children that are chronically sick and sleep becomes routinely interrupted, especially in times of EoE flares… the enemy.
This has become a way of life for me and my husband. Staying up late to give bolus feeds, then waking up a few times each night to change pull-ups and pajamas that are urine-soaked. Our son consumes 40-45 ounces of Elecare Jr. daily via bolus feeds through his g-tube. Sixteen of those ounces come late at night and Brady oftentimes sleeps so hard, he doesn’t wake up to go to the bathroom. Thus, resulting in multiple pull-up changes.
SWEET DREAMS
"Hey Mommy? Will you sleep in the guest room?" Brady asks hopefully… Every. Single. Night. It wasn’t until recently that I finally put two and two together and figured it out.
This habit started several months ago. It was a time when Brady’s EoE was flaring and he had a couple of rough nights in a short time span resulting in multiple trips to the bathroom to vomit in the middle of the night. These nights are nothing short of exhausting.
It’s the small sound that I only slightly hear in my deep-sleep induced state that quickly escalates to, "MOMMY! MOMMY! DADDY!" It’s at that point that I shoot straight out of bed in a dead sprint down the hall, heart pounding, fighting the sick sense of dread of what is about to happen, all while just trying to reach my son’s room in time.
What follows is nothing short of heartbreaking and frustrating and draining. My husband and I quickly carry Brady to the bathroom where he will eventually projectile vomit, almost always missing the toilet bowl, resulting in the most foul-smelling vomit that lands all over the bathroom floor, toilet, bath mat and wall. Its days before the smell is really truly gone.
The vomiting can go on for several minutes. We wait, just to make sure Brady is all done. We rub his back, put a cool washcloth to his forehead, and quietly talk him through yet another EoE flare. Sometimes I’m successful, but most of the time I’m not at holding back the tears. It’s especially heart-wrenching when Brady looks up at me with tears in his own eyes and cries, "Mommy, why do I always have to throw up? I HATE throwing up." He repeats over and over again.
Oh son, how I wish I had good answers to your questions because I grapple with the same questions myself. I try to soothe him as best I can and tell him he will start feeling better soon. After we get Brady calmed down, we change him into a fresh pair of jammies not soaked in vomit and tuck him back into bed. Lastly, I tell Brady, "Sweet dreams, jelly bean." Then I wait for it… and the inevitable question arises, "Hey Mommy? Will you sleep in the guest room?"
I answer, "Of course I will, sweetheart." Most of the time I make it back to my own bed and Brady is none the wiser. Maybe this is wrong, but a girl needs her sleep and I’ll admit I thoroughly enjoy our king-sized insanely comfortable mattress. Sometimes his flare is so bad, I don’t feel comfortable going the rest of the way down the hall and I find myself settling into the guest room, just as requested.
So oftentimes, we as parents, try to protect our children. Some parents fight the monsters that come out at night. Some parents soothe a child after a night terror or nightmare. Some parents check under the bed, in the closet, in the drawer looking to chase away the fears of their child.
Monsters don’t come out to scare Brady. Brady rarely has nightmares. Brady has no fears of what’s under his bed, in his closet, or in his drawer. No, my son fights the terror of something else altogether… fears of the nighttime vomits. Fears of the EoE flares. Fears of waking up in the middle of the night with excruciating stomach pain and the knowledge that this pain will result in yet another violent vomiting episode. He sleeps with his EoE enemy.
Brady thinks that by having me or my husband sleep in the guest room (located right next to his room) that somehow, someway that will make it all better. Oh, how I wish it were that simple. What I wouldn’t give to have the power to chase away the EoE flare monster. To utterly destroy that SOB.
All I can do, all I have the power to do, is pray. I pray that Brady can get through the rest of the night without another vomiting episode. I pray that he can fall asleep to sweet dreams at last. I pray that he can wake up, ready to face a new day with a smile. I pray for a cure. I pray for rest. I pray.
