Here’s our family’s story…
Imagine a cute couple (that’s us, my wonderful husband and little ol' me) sitting in the specialty doctor’s office, hearing news that our once-healthy baby has a serious medical disorder. Then the doctor finishes the devastation by dropping this extra bomb: “Your child will need a g-tube within five years.”
It sounded to us like a death sentence.
It turned out to be a life-saving gift. More times than I can count.
For a solid year, I fought the doctor’s prediction.
I faithfully drove my daughter an hour and a half every week to see the feeding therapist. We worked and worked to retrain her chewing skills as her cheeks grew flat and her dimples disappeared.
For five worry-filled hours each day, I tried to spoon purees into my daughter's mouth. She sputtered, gagged, and mottled red in the face.
|Do you see the red mottling around her eyes, nose, and mouth?|
This was a sign of aspiration.
Oh, and the head? That's my dear hubby's, not mine.
Eventually she refused to open her pursed-tight lips. Her feeding became a battle of wills. And tears.
More times than not, our labor to get a tiny meal down her was rewarded with a vomit.
Between her second and third birthdays, she lost 4 pounds of body weight. Little girls should gain about 4 pounds that year. She suffered from constipation and poor resistance to illness. Both of these were directly related to her lack of adequate water intake.
A swallow study around her third birthday showed my daughter was aspirating food into her lungs. Her coordination to swallow had deteriorated to the point she was no longer able to safely take her nutrition by mouth.
Talk about mom-guilt! My daughter’s “stubborn refusal to eat” had simply been her effort to protect herself. I had been putting her at risk by trying to feed her.
Once we understood her aspiration and its risks, we stepped off the battle field. Her health needs made it clear that the time had come to quit fighting against a tube. It came almost as a relief to have the decision made and find ourselves in a truce.
Still, in the weeks of waiting for her surgery date, we wavered between worry and sadness and hurry to get-this-over-with.
We worried terribly about surgery, even if the PEG procedure to place a g-tube is a quick and relatively minor one. Our daughter had never had general anesthesia and we didn’t know how her body would react.
I felt saddened by defeat that all our hard work couldn’t beat the odds.
The idea of the g-tube was terrifyingly medical. I deliberately chose a career other than nursing; I don’t do needles or blood. Yet suddenly here I was to become a sort of “nurse” at home. I was worried whether I'd be able to handle that or not.
My husband felt silly for worrying if he’d still be able to blow raspberries on her tummy. That wasn’t silly at all. Not one bit.
We both felt sad over losing her perfect pink, unblemished tummy. I cried.
But our story ends happily ever after.
Surgery was a breeze. Recovery was fairly smooth. And within a week I no longer felt like I had five thumbs on each hand.
Best of all, the g-tube gave us an upper hand with our daughter’s health. Instead of bowing to her disorder, it gave us charge over it.
1) She no longer risks her life to get the nutrition she needs to sustain it. In fact, her swallowing actually improved once the stress of having to eat was removed. She continues to eat for pleasure; it’s a fun thing now.
2) She is well hydrated. This is a major factor in avoiding constipation. It also helps her fight illness and recover faster when it does hit.
3) She gets exact doses of her medications. No more wondering if she managed to swallow what she needed. No more struggles. (You can read how we prepare meds for her g-tube here)
4) Even if she is ill, seizuring, or sleeping off the effects of a seizure, she still gets the food and water she needs. Being able to tube-feed her during several pneumonias was life-saving. And since seizures are a daily thing at our house, being able to continue with food and water and medications while she sleeps afterward is monumental.
5) While not a reason for getting the tube, our daughter’s oral feedings had pretty much worn me out. The cost in time and frustration and worry was heavy. In many ways, it felt like her deterioration was destroying me in the process. The g-tube restored so much to our lives. It allowed us to spend our time together in pressure-free, pleasant ways instead of embroiled in battle over eating.
And it normalized our family routine in unexpected ways. When our daughter still struggled to eat by mouth, we had stopped having Girls Day Out because feeding in public was too demanding. We certainly couldn’t go through drive-ins, since feeding her took all my attention. Now with the g-tube and the pump to go along with it, we were able to do the small things that many people take for granted. We could enjoy restaurant meals without occupying the table for an hour past our welcome, since she could continue her meal while we drove away. It was very liberating to enjoy these freedoms again.
Oh yes. Raspberries on the tummy? MOST definitely possible. And the squeals are delightful.
What's your g-tube story?