The G-Tube Appointment

“NOOOOOO!” she screams, trying to sit up on the hospital bed. I’m trying not to cry. She is twisting her little body back and forth, away from the surgical clinician nurse. It is her g-tube feeding tube internal measurement appointment.

“It shouldn’t hurt,” the nurse says gently, “but it might feel weird or uncomfortable.”

My daughter nods with big tears running down her face. “It DOES feel weird, and it DOES hurt!”

The nurse asks me to hold her arms down. She pops the g-tube out of her abdomen and inserts the measurement tool, all very swiftly. My daughter is screaming so hard, no sound is coming out anymore. Her face is a frozen mask. Measurement done, new tube is in. It is over. The nurse softly suggests we could pick up some Tylenol at the Children’s Hospital pharmacy for any lingering discomfort. “This procedure should not be painful. …I’m wondering if it is a bit fear-based?” she suggests, and I nod.

My daughter looks up at me, tears still tracking down her face. “Can I get a treat?” she asks.

“Sure baby, sure…” I say.

Taking Blood

My daughter has long stopped crying. This is what happens when she is overwhelmed. She will hold her breath until she passes out.

“It’s not dangerous, but I know this is hard on you,” the nurse says kindly. They have been trying to get blood for some necessary blood work for over an hour. I think the count is up to three nurses who have tried now. It is not their fault; my daughter’s ropy, visible veins just seem to shrink away from the needles every time.

The nurses talk together, and one says to me, “We are asking to see if an ER doctor can come take blood from her jugular. But first, we can try from her head. We have one more nurse, very experienced, who will try before we have to do that. Hang in there.”

“Oh, God!” I yell. Tears are pooling in my eyes. I know they are trying. I know this has to be done. Why is it so hard?

Changing the Feeding Tube

I hold my daughter’s arms at her sides. “PLEASE DON’T!” she yells, “It will hurt!” It is feeding tube change-out time. We have been trained on how to do this at home. My husband is trying to gently take out the old tube. Ten seconds, maybe less, is all we need.

“Baby, it will be over before you know it. If you are crying, your muscles will be tense, and it will be harder for us to do,” I say. She is past that. She is almost hysterical.

I say to Tyler, “If they don’t give us a sedative for this next time, I am going to demand to do this in their office. So they see what this is like for her! This is nuts!”

But in my mind, I know what they will say. I know they will say her breathing condition makes sedatives too dangerous at this time. That her suspected seizures and episodes of passing out will need to be resolved before we can look at sedatives again.

Tyler is quick. He takes a breath, pulls the tube. I hand him the new tube, lubricated and ready to go. It’s in, and he fills the internal balloon with water. It’s done. Our daughter is wracked with sobs so deep they have gone silent. I hold her. Tyler runs his hands through his hair and brushes tears off his cheeks. I want to scream, or swear, or both. Three months…we don’t have to do this again for three more months. Maybe we can even push it to four.

The Health Clinic

Her body stiffens. We pull into the health clinic parking lot and she is frozen. “What is it?” I ask her as I unbuckle the baby. But then again, how could I have been so obtuse?

“I DON’T WANT A NEEDLE!” she cries.

“Oh baby, no…today is not for you. Your little brother needs his shots today. Today you just watch!” She is hypervigilant for the whole appointment.

Here are real-life experiences of an adoptive mom with a special needs adopted daughter with a fear of medical procedures. She gives tips on how to help.

Her History

Our daughter started having medical difficulties at 2 months of age, although telltale signs were apparent from her birth. She was a “good baby,” but a little too good. She was prenatally exposed to drugs and alcohol. She would have slept through the night from day one. She almost never cried and never seemed to ask for a bottle.

By 2 months of age, our daughter was barely eating—my days were spent pacing the living room, trying to get her to take a sip or two of formula. Our rural northern community has had doctor shortages for years, which resulted in my showing up to the clinic 30-40 minutes before it opened to queue up—outside—at minus 22 degrees Celsius to try to secure a spot in the walk-in clinic every other day for almost two weeks.

It started with thrush on Christmas Eve. The doctor thought, after the thrush, that the antibiotics had upset her tummy, which was affecting her eating. The next walk-in clinic doctor said she would pick up and to just give her time. The problem with seeing a different doctor every other day is that some continuity is lost.

By the time I finally, finally weaseled my way into an appointment after hours with our regular doctor, on a day he was already full, I knew something was really wrong. The doctor had tears in his eyes after he did a startle response test, only to find her like a limp rag in her hand. “I’m sorry, “ he said softly, “But you need to pack a bag. I’ll have to admit her.”

The Hospital Visits

We have no pediatric ward here, so initially, we were in the maternity ward, which the nurse was not thrilled with. “We can’t have germs in here from older babies—we have to send you up to ICU.”

ICU was not happy. “We don’t do pediatrics here. We will start a gavage tube. She will perk up, and you will be out of here in no time.”

Several days later, I listened to them sorting out transportation to BC Children’s Hospital in Vancouver for us. Initially, we were told we would have to get there on our own, as though our daughter had something wrong, no one knew what, and she wasn’t that sick, she just was not eating.

The final decision—and I still don’t know why it was made, if it was a turn in her medical status or just a kindness to save us a 14-hour journey or an expensive plane ticket on our own—was for an air ambulance flight.

Our first visit to BC Children’s Hospital lasted three weeks. Our daughter would be hospitalized a minimum of two times a month for the next year. By the age of 18 months old, she had been on 22 planes, flying back and forth for MRIs, EEGs, ECGs, barium swallows, surgery, and for monitoring during terrible episodes where she would pass out and turn blue.

What Happens When Kids Are In and Out of Hospitals?

For children that undergo a lot of medical interventions, the natural order of things can be disrupted. In our daughter’s case, her gross motor skills have been deliberately delayed. When she still had a nasal gastric tube snaking down from her nose to her tummy for a total of 6 months, any rolling or jumping caused her to gag and vomit. We had to restrict her movement until she could have the surgery for a more permanent g-tube in her abdomen.

Long separations from home were a concern of mine, although she was never ever hospitalized alone. Tyler or I always stayed with her. Many children in the foster care system are not so lucky. Funding is just one issue—jobs back home and other children are also reasons caregivers cannot always be there. The result of all of this trauma—and it is, at its root, a form a trauma—can be a lot of fear.

Our daughter is now almost 6 years old, and the medical interventions used to save and improve her life have left a mark. She is fearful, and she has terrible memories of the procedures she underwent.

The doctors and nurses were always kind and good to her, but the painful procedures and long stays in the hospital have changed all of us. Her upcoming medical procedures loom like giants in her future.

She is currently awaiting eye surgery and will go for her internal tube measurement in three short months. I’m dreading all of this just as much as her. It is so incredibly hard to watch her go through all of this. I write this partly to remind myself; I write this as something to turn to the next time we face a giant; I write this for others who walk this medical journey as well:

What Can You Do to Help a Fearful Child?

What can you do, as a caregiver? What helps? What steadies you as you are reeling? As your child is reeling?

- Be a rock. There is nothing harder on earth than watching your child go through a difficult time, let alone a painful time. Watching your child’s body endure painful illness or medical procedures feels like a sort of torture. As hard as it is, I have learned that my daughter needs me to be her rock. She needs to look in my face and see confidence. She needs somewhere to turn to feel safe and protected. Just like a horse reads its rider and can become agitated if the rider is nervous, your child can become jittery and hypervigilant if you are upset. Our children take their cues from us.

I have learned the hard way that although it is fine and sometimes necessary to fall apart later, in the moment, I need to take a breath, and be present and be strong. I can’t always stop the tears in my eyes, but I can still look into hers and portray strength. (Caregivers may need to join a support group, or find a counselor or trusted prayer partner—someplace to be able to talk openly about our own fears, pain, etc.)

Be honest. “Will this hurt?” is probably the most common thing my daughter asks me. And I often have to say, “Yes.” While we have found almost every doctor and nurse will work to alleviate or eliminate the pain of a procedure where possible, there can often still be discomfort and fear. Seeing a needle loom over a vein, for example.

I want to be the trustworthy source of strength for my child—what good is it to them to say, “No, this will not hurt,” if you know that it will? This just breaks trust. Saying something like, “You may feel a pinch and it might feel strange, but I will be right here with you, holding your hand,” is much more valuable and builds trust.

Be an information giver. Information is power. When we have information, we feel more in control. The first time my daughter had surgery, we were directed to an online video for out-of-town patients that outlined where the appointments leading up to the surgery would happen, a short interview with the surgeon, and photos and video clips of the recovery room, etc. We were also able to conference call with the surgeon prior to the procedure so that we as adults could ask questions.

Information about where you are going, what is going to happen, and who will be there can help alleviate some of the fear. If there are no programs in place for this, you can likely still go early (maybe even earlier on the same day as the procedure, if you are from out of town) to look around. I know one family who had their son practice lying down and lying still for a medical procedure he had to go through. Any preparation that can be done will help. Your child will be more comfortable if they know what is happening.

Consider a companion doll. We bought a $20 doll from a local store, drilled a hole in her abdomen, and inserted a tube our daughter had outgrown into the doll’s stomach. Our daughter was fascinated! Not only was she able to see the mechanics of how the tube was inserted and removed (She did not witness the drilling of the hole in the doll!), but she now has a companion that “knows” how it feels. Our daughter has practiced changing her doll’s tube, and we notice that she verbally comforts the dolls before and after her “procedure.” I love this practiced empathy, this chance to be on the other side of things.

Treats and gifts…I’ve learned not to. Initially, I felt so terrible about what our daughter was going through that I bought her anything she asked for afterward. This created its own issues. I did not want our daughter growing up to expect and demand candy and toys at every inconvenience. As hard as it was, we decided it had to stop. It also created so many issues with our other children.

Now, we try to make the day special in other ways—a walk together around the hospital grounds first (the Children’s Hospital we fly to is quite beautiful), reading a book together, taking the Sky Train (a real treat for us farm folk!), and maybe a lunch or dessert out together afterward. Still special without the materialism.

Advocate. I can’t say it enough! If you see a problem with the plan of care, say so. If your child is in pain, say so. If your child needs something, say so. You are the one that lives with this child, and you know them best. Speak up, even when it feels like you are being a pain. The person most invested in your child is YOU—never stop advocating!

Our family is currently going through more medical turmoil with our daughter. We’ve had periods where things have been fine, but we are back to appointments, out-of-town specialists, and surgery waitlists. It is not my favorite place to be. But I take one look at her, and I realize that she wants to be anywhere else but here. She needs me. She needs my husband and me to take her by the hand, and say, “We’ve got this! We are here, and you are not alone.” And I say it to you, as well—YOU, caregiver, have got this. Face this medical giant with your child. Turn, square your shoulders, and face what comes. You were meant for this.

 

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