Swallow Study Tommorrow and Other Hard News

We stopped Nathaniel's oral feedings at the end of July. For the first few weeks, he would grab at our food or sign 'want' when he saw his puffs container. I tried very hard to schedule the needed swallow study as soon as possible so that he did not lose his desire to eat or lose the skills we worked so hard to develop while we waited for the test.

Nathaniel was seen by therapy services at the children's hospital for a swallow study in January 2014. At the time, the evaluating speech and occupational therapists felt his eating skills were too premature to conduct the test. We were sent home with instructions to work on eating. By late spring Nathaniel had improved, but he coughed and vomited every time he ate orally. Our weekly occupational therapy sessions worked on feeding as instructed, but never addressed the coughing and vomiting. We sought an occupational therapy evaluation with a different therapist who strongly suspected that Nathaniel was aspirating. Precious time lapsed in waiting for the second evaluation, waiting for that report to be sent to the doctor, waiting for the doctor's order to be submitted for a new swallow study, and waiting to schedule the study.

Two months of time not eating. The swallow study is tomorrow.

Nathaniel no longer grabs for our food or signs 'want' when he sees his puffs container. He seems to have little interest in eating orally now. He has lost interest and skills that we worked so hard to achieve. Further, while the bronchoscopy in early August showed no physical reason why Nathaniel is aspirating, it did show that Nathaniel has developed trismus. We suspect that the oral stimulation needed to keep the jaw muscles pliable and moving has not met despite our daily effort.

Sometimes this all feels overwhelming.

When we switched occupational therapists, we started working on oral stimulation as the primary focus of our therapy sessions and homework. We developed routines and games for teeth brushing and spent time daily massaging Nathaniel's face and jaw muscles. We worked constantly at getting our hands around and fingers in Nathaniel's mouth. He is uncooperative at best.

Thankfully Erica (our new OT) is equally as stubborn as Nathaniel. And she is very creative. Who knew that when you bounce on an exercise ball and fall backwards that you naturally open your mouth? Erica did! Just one example of the fun ways we are working at getting Nathaniel's mouth open.

Nathaniel opens his mouth when asked to do so now. And he has started biting! Most parents cringe when their children bite, but the first time he chopped down hard on my finger, I rejoiced. The fact that my finger was all the way back at his molars to be bitten was nothing shy of a miracle. I pray that all our non-food oral stimulation will help us move forward when we get permission to start eating again.

Another concern that developed this summer related to aspirating is that Nathaniel has not gained weight since May. In fact, he has lost about half a pound. We suspect this is due to a combination of discontinuing oral feeds and increased mobility burning more calories. When I did the calculations last month, Nathaniel was a couple hundred calories short of his daily caloric need just to maintain his current weight.

Again, our team offered suggestions. Nathaniel's dietitians put their heads together quickly and came up with a plan. For the last month, we have been increasing his g-tube feeds by five milliliters every other day. It is not much. An increase of two teaspoons per feed a week. But the small increase of each dose over a month now means Nathaniel receives an additional one hundred and forty calories a day compared to a month ago. It is an additional full "Nathaniel sized" meal. The best part is that Nathaniel has tolerated this increase with no vomiting. Prior to increasing calories, he tolerated an increase in the rate that his g-tube feedings were administered with no vomiting. Unfortunately this likely indicates that the vomiting we interpreted to be g-tube dose and rate intolerance was likely due to oral feeds and aspirating.

All these realities - not asking for food anymore, trismus, losing weight, waiting for testing, constantly changing the rate and dose of feeds -  it all gives Nathaniel's Momma a heavy heart. I am both excited and concerned about tomorrow's test. Without a doubt it will bring new information, new treatments, new challenges.  I have to purposefully reread my own words and focus on the small victories amidst these challenges.

I have to focus on that upside down wide mouth smile that overwhelms me with joy.