Carl
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Carl at 10 months old
Our son, Carl, was born June 22, 2003. Carl's breathing became labored when he was seven weeks old. Our local pediatrician told us that Carl was making a sound called "stridor" and we should immediately take him to the emergency room of the nearby children's hospital. The next morning, a laryngoscopy led to a diagnosis of congenital subglottic stenosis. A tracheotomy was scheduled for the end of the week, with a plan for airway reconstruction after one to two years. The day before the surgery, Carl's condition worsened. He was put under a heliox breathing tent, and all the supplies for an emergency tracheotomy were placed in his hospital room. Fortunately, he remained stable through the night. I listened to him cry as he was wheeled away, and I tried to memorize the sound because I knew I would not hear it again.
His subglottic stenosis is one of two birth defects. He had been diagnosed in utero with duodenal atresia, which is a blockage in the first part of the small intestines. The surgery to repair the atresia took place the day after he was born. We are fortunate that the congenital subglottic stenosis did not cause respiratory distress from the very beginning. This way the doctors could focus on the intestinal issues without the complications of airway management.
When Carl was 12 months old, his ENT doctor determined that Carl may be a candidate for airway reconstruction as early as 15 months. But the doctor was reluctant to proceed because Carl had a history of frequent vomiting and gastroesophageal reflux -- GI problems deriving from the anatomical abnormalities that resulted from the surgical repair of his intestines. (To protect his esophagus and airway, Carl takes both zantac and prilosec to reduce stomach acid.) The ENT and GI doctors came up with a plan to treat Carl with antibiotics to minimize the bacterial overgrowth in his duodenum. This proved effective in reducing gas production in his intestines and stomach, and reduced the frequency of vomiting. We were so pleased when the ENT doctor scheduled the laryngotracheoplasty (LTP) for September 2004 (age = 15 months).
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Carl at 15 months old
Right before his airway reconstruction
Prior to the surgery, the ENT doctor said there was a strong likelihood that he would have to do an anterior and posterior rib cartilage graft, due to the severity of the stenosis (Grade III). Fortunately, an anterior graft alone was sufficient. After the repair, the surgeon placed a stent in the airway which was to be removed after three weeks.
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Carl on the ventilator post-op
After surgery, Carl was brought to the ICU and was on a ventilator for approximately 24 hours. Carl needed a lot of pain medicine for the first two days. In the OR, the surgeon had placed a cuffed trach, so Carl had minimal tracheal secretions during the days after the surgery. Everything changed four days post-op when the trach was changed to his usual cuffless Bivona. Suddenly there was an enormous amount of tracheal secretions, and Carl had to be suctioned almost constantly. The other ramification of the return to a cuffless trach was that Carl was now at risk for aspiration due to the stent in his larynx. And indeed he did aspirate. He coughed and choked while eating and drinking, and food-colored substances were suctioned from his trach tube. It seemed that he couldn't successfully swallow anything. The doctors were starting to talk about whether Carl should be given a G-tube, and I really wanted to avoid this. After consultation with the speech therapist (swallowing expert) and a nutritionist, we came up with a plan for PO
feeding. To minimize the likelihood of aspiration, all liquids were to be thickened with "Thick-It", a powder that turns a liquid into a sort of a gel. All solids were to be pureed or mashed, so that if aspirated they could be coughed up or removed by suctioning.
Carl was discharged five days after his LTP, which is the shortest hospital stay in the range of possibilities that we were given. I knew that he was still at risk because he had severe diarrhea (a reaction to the prophylactic antibiotics). Together with his difficulties in drinking fluids, this was a bad combination due to the risk of dehydration. But I felt strongly that Carl would be psychologically better off at home. In the hospital he was traumatized by everything, from the IV sticks to the blood pressure cuff. At 15 months, he was old enough to be aware and fearful, but not old enough to understand any of it.
The three weeks before the stent was removed were very difficult. Even with all the precautions, he still aspirated frequently, and had a general lack of interest in eating. We gave him PediaSure, to maximize the nutritional content of what he did manage to swallow. His weight dropped from 21 lbs to 18 lbs in three weeks.
The day the stent was removed was a joyous day. Carl immediately returned to normal on all fronts. His appetite returned, and his mood perked up.
It is now December 2004. We were recently given permission to have Carl wear a Passy-Muir valve for ten minutes per day. In the mean time, we continue to develop our sign language skills (Carl's and ours). Carl was scheduled for a laryngoscopy/bronchoscopy this month but it was canceled due to illness. We expect that Carl will be decannulated some time in 2005, possibly before his 2 year birthday.
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Carl at 17 months old
As is the case for all parents of children with special medical needs, this experience has profoundly changed our lives. In the interest of sharing and encouraging, we have constructed a web site that captures our experience. Also included there is a collection of our personal videos on everything from teaching sign language to trach changing.
