Tuesday, September 2, 2014

Swallow Study Fail

She is fully aware that she is driving with her big toe. Left, right, left, right. Slight pressure on the gas, slight pressure on the brake. Walls close in around her as two 18 wheelers flank her lane. She inches forward, grey pavement slowly crawling under her car.

They are now officially late for the baby's swallow study at the children's hospital. A normally hour long drive has taken an hour and a quarter so far with another half hour left according to the GPS. Highway 10 is apparently a big attraction this day after Labor Day. Everyone wants to experience it.

As they pull into the handicap spot in the parking garage, her mind frantically runs through the list of things she needs to grab in order get to the appointment 30 minutes late. Insurance cards, suction machine, diapers and wipes - just in case. The baby is remarkably calm and seems to sense he is about to go for a ride.

He almost leans forward when she reaches an arm under his neck and another arm under is legs. He is getting heavy for her. At 3 and half years old, 38" and 30 pounds, he may seem just right in the height to weight department, but hoisting his dead weight, while still doable now, looms ahead as another challenge. If he could just lift his head and/or lean forward, wrap his arms around her neck - anything. She hopes for and will take anything.

They rush into the hospital, up to the check-in desk, then around the corner to another registration desk, and then on to the final imaging desk. Three desks. At the third one, the baby has a seizure, gets his arm band identity bracelet, and gets ushered to another waiting room. They are told they would have to be squeezed in due to the late check-in. She silently and sarcastically thanks Highway 10 traffic and watches the Duggers on the little TV in the corner.

As the Duggers arrived in China, one of the staff calls the baby's name, and she proceeds to wheel him into the imaging room. As the arm band, name and birthday are checked, she is asked to place his 30 pounds in the Tumble Forms feeding chair which is conveniently located at almost shoulder level.

The chair only has a lap belt. No chest support, no shoulder strap, and nothing to support his head. He slumps in the chair and his head slips and bangs on the radiation machine. They had her place one hand on his chest for support and another hand on top of his head to keep it steady and facing in the right direction. His shoulders inch forward, his heavy head tilts back.

Needless to say after one spoonful of the pudding thickness, he failed the test. A large portion of the  bolus had dropped straight into his esophagus, but a small portion slipped into his airway. The back of his mouth and throat showed no signs of trying to control anything. Within 2 minutes, the staff shutdown the study and sent them on their way.

She drove up to the preschool and turned of the ignition. Staring straight ahead, exhausted from getting up early and the stressful morning drive, she wills herself to stay tough. She will not crumble today. She will not give up today.

She forces herself to accept the silver lining, that the result of the study gives clarity to a crossroads they had come to in his treatment. She now knows they will back off from the possibility of feeding by mouth and focus on the emerging and immediate need to get his increasing seizures under control. Hopefully, he will qualify for a treatment called a Ketogenic Diet. Hopefully. Because without hope...

She sighs.

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