Carl Coetzee
TrachKid Profile
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Our son, Carl, was born June 22, 2003. When he was seven weeks old, his breathing became labored . Our pediatrician, Dr. Pierson, told us that Carl was making a sound called "stridor" and we should immediately take him to the emergency room of CHOP, the Children's Hospital of Philadelphia. 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, 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 to the OR, 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 had taken place the day after he was born, and was performed by Dr. Scott Adzick. 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, Dr. Ian Jacobs, determined that Carl may be a candidate for airway reconstruction as early as 15 months. But Dr. Jacobs was reluctant to proceed because Carl had a history of frequent vomiting and gastroesophageal reflux -- GI problems deriving from the anatomical abnormalities in his intestines. (To protect his esophagus and airway, Carl took 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 Dr. Jacobs scheduled the laryngotracheoplasty (LTP) for September 2004 (age = 15 months).
Prior to the surgery, Dr. Jacobs 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. 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. Four days post-op, 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.
In December 2004, Carl was scheduled for a laryngoscopy/bronchoscopy but it was canceled due to illness. Carl's vomiting had increased, and there were signs of abdominal pain and the beginning of dehydration. In January 2005, GI Dr. Semeao did an upper GI and it was determined that Carl's duodenum was very dilated and that the intestinal muscles were not functioning properly, so-called aquired megaduodenum. Dr. Adzick and his team performed a duodenoplasty that involved a tapering of the dilated duodenum. It took many weeks to recover, but it worked beautifully to eliminate Carl's vomiting.
We expect that Carl will be decannulated some time in 2005, possibly before his 2 year birthday. In the mean time, we've been given permission to have Carl wear a Passy-Muir valve for ten minutes per day. We continue to develop our sign language skills (Carl's and ours).
Update November 2008. In June 2005, when Carl was two years old, we brought him to CHOP for a laryngoscopy, and endotracheal leak test. The intent was to determine the effective inner diameter of Carl’s airway, and subsequently determine whether Carl was ready for decannulation. We were hopeful. Dr. Jacobs told us that the grafts had healed well, but the diameter was not what he was aiming for. With concern, we listened as we were told we’d have to wait until the growth was sufficient.
In all honesty, our disappointment was profound. We had eagerly anticipated Carl’s imminent decannulation, for so many reasons. Mostly we wanted Carl to no longer have an artificial airway, and we wanted him to be free of all the risks that go along with that. But we also wanted it for all sorts of practical reasons. We wanted Carl to start to vocalize and develop speech. We wanted Carl to be able to go to preschool. We wanted to be able to travel without emergency equipment. We wanted normalcy (even though we didn’t really know what that was).
We knew that we had been lucky. Carl had been born with two very serious birth defects, and yet it was very clear that due to the precise, careful, innovative interventions he had received at CHOP, he would escape any lasting impacts. He was on track to develop into a normal, healthy, happy boy. We could see a very positive future ahead for our family, and we were eager to be there already.
We accepted that this would have to wait for at least six more months, if not more. Most importantly, Carl was enrolled in nursery school. Everyday, he was accompanied by one of our nurses. She looked after him, vigilantly, making sure none of the other children would be too curious about Carl’s trach tube. She watched how he played on the playground, keeping him away from the sand. She washed his hands constantly, in an attempt to protect him from the sea of viruses that are pervasive around children this age. We didn’t effectively keep up with sign language during that year, because it was difficult in the nursery school setting. But it seemed more important that he would be surrounded by kids his age, and would experience this wonderful world, even if he was not able to sing the songs.
Another disappointment came six months later when Carl’s laryngoscopy was canceled due to illness. Finally in April 2006, Dr. Jacobs did a laryngoscopy and an endotracheal leak test, and determined that Carl was ready for decannulation. Two weeks later, Carl was admitted to CHOP. His trach was capped, and he was observed for twenty four hours. He had so much fun being at CHOP while not being sick. He rode around the ward a hundred times in the “big red car”, singing and signing Wiggles songs. (Yes, by this point, he had started to have a voice.) After a successful night, the doctor came and took out his trach. Just like that. The end. No more.
We celebrated by visiting relatives in various cities, and we had a joyous party for his three-year birthday. We were happy the day when the medical equipment company came to take back the suction machines, pulseoximeter, O2 tanks, etc. We were not happy to say goodbye to our Bayada nurses who had become a part of our lives and who had taken such good care of Carl for three years.
In April 2007, two months before Carl’s fourth birthday, he had surgery to close the fistula. That really was the end. Since his decannulation, Carl had worn bandanas around his neck to protect the opening, and to keep things contained when he coughed. We changed the bandanas five times per day. We are still the proud owners of about fifty colorful bandanas – all quite faded from the numerous washes and bleaching.
Now it is 2008 and Carl is five years old. He started kindergarten this fall, and he has been playing the violin for a year. He sings beautifully. His dolls still have trachs, but his own trach is a distant memory. He has fond memories of CHOP, and hopes to have a reason to go back there, to play in all the play rooms, and ride the big-red-car. I too have fond memories of CHOP because every time we were there, we were given the best of care and I knew “everything would be all right”, and it was. We will forever be indebted to Dr. Pierson, Dr. Jacobs, Dr. Adzick, Dr. Semeao and all the marvelous doctors and nurses at CHOP.
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