Toddler Trach and Transitioning Off Her G-Tube

Spot_12_blog_TrachOur daughter Asa needed a tracheotomy (trach) and a feeding tube as a very young infant. These were great tools that allowed her to grow older, but they created whole new challenges for my husband and I to face. 

Getting Asa to do all her eating and drinking orally was a long process. She missed the window in early infancy when a baby connects the feeling of hunger to eating because during all her surgeries and respiratory intubation she was fed by tube. Then for a very long time she didn’t experience much hunger because we were constantly feeding her small amounts so she could keep it down–barf management. When we started giving her solid foods at one year old we made purees and put them in the G-tube with big syringes. Technically we weren’t supposed to put solids in the G-tube, only formula, but since we thought real food was much better that’s what we did, without problems. We did end up with food on the ceiling when the syringes slipped, but that didn’t pose any health risks.

Asa’s early eating was all little tastes. We had been advised to make her experience of eating as positive as possible, so we made a point of having fun with food and avoiding power struggles. One of the first things she ate of her own choosing was a tortilla chip that she snatched out of Chris’ hand one day at the park. She didn’t have teeth yet but managed to get it down.

She had a bad stomach flu at about 18 months old, cause for another ER visit. The flu lasted two weeks and she lost a lot of weight. Her legs shrunk down to two little sticks. But once she was better she got very hungry, so she really made the connection between hunger and eating. All day she ran over to the refrigerator making the “eat” sign, and soon enough she gained back the weight.

When Asa was almost three she had been eating and drinking exclusively by mouth for several months and we were at last able to take out the G-tube. She had a surgery to close the stoma (the surgically made hole between stomach and outside her body). The doctors did another scope of her trachea at the same time as the surgery and saw no improvement. The ENT doctor consulted with colleagues in Cincinnati, the “airway capital of North America,” and told us there were just a handful of kids on the continent with Asa’s particular picture. Some of the kids grew out of the condition, ie. grew more cartilage on their own, and some did not. There was no way to know for Asa.

Captain_Underpants
Asa Left, Captain Underpants Right

However, by this time Asa’s health was generally more stable and we could do more activities and be around other kids more often. When Asa was three, four and five, we took kids’ classes at the local community center –yoga, dance, art, Spanish Mother Goose– spent tons of time at the library, and we also started a playgroup. Asa was ready for some regular peers, but a regular preschool would be far too much germ exposure. My friend Teresa and I organized a group with two other families, pooled our resources and hired a teacher two mornings a week, meeting at each house on a rotating basis. The first teacher we had didn’t work out super well, but the second one we found, Jessica, was amazing. Teresa and I liked her so much we were high-fiving each other during her interview. The kids had a great time and learned all kinds of things through their activities.

 

Along with more peers Asa also had some imaginary friends and pets, also an imaginary brother and second set of parents. Asa’s “other mom” was called Annie. Annie gave her candy and showed her how to put on makeup, and once Asa told me Annie helped her even more than I did. I said that must be a LOT.

Spot 12: Five Months in the Neonatal ICU

Spot_12_Cover_90Jenny Jaeckel is author of Spot 12: Five Months in the Neonatal ICU, the graphic novel coming out this October about Asa’s infancy. Visit the Spot 12 website for more information or visit the publisher’s website:www.raincloudpress.com. You can preorder the book directly from the distributor here: IPG (in English or Spanish). 

Or go to your favorite online retailer to preorder.