Joe
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Joe is 4 ½ years old and is the joy of our lives. He is a bright, active and happy child. He was born two months premature and at two weeks of age, he underwent a tracheostomy for bilateral vocal cord paralysis. Joe had a long stay in the neonatal intensive care unit, which was without a doubt the most stressful three and a half months we had ever faced. Over the years, he had very limited recovery of vocal cord movement although at times it appeared to be more than others. Our hopes for recovery and decannulation would go up and down like a roller coaster with each laryngoscopy. A trial of downsizing and capping of the trach tube was unsuccessful at 2 years of age. Prior to the decannulation trial, he had to have granulation tissue removed from his suprastomal area as it had been obstructing his airway. One and one half years ago, we were told after a routine bronchoscopy that he had significant suprastomal collapse, which would make another trial of decannulation "doomed to fail". Up to 18 months of age, he had problems with reflux and aspiration, which resolved once he could tolerate wearing his speaking valve all day including while eating and drinking. He also has a right anterior hemidiaphragm paresis that has not been an issue for him since he was a baby. Joe's speech development is now level with his peers; he has attended playgroups and museum activities, learned to ski and skate, but we always found it a difficult balance --- the risk of infection versus socialization --- especially in the winter months.
Joe became quite ill in February of this year (2001), requiring hospitalization, oxygen, asthma inhalers and antibiotics for a viral infection. He had never become this ill with childhood viruses in the past. Shortly after this illness, we embarked on a quest for information and discovered Aaron's Tracheostomy Page. We had always availed ourselves of the latest medical literature, but had had no contact with other parents facing similar challenges. We are so grateful to all of the families who shared their stories and courage and who patiently and kindly answered our probing questions. In this way, after much deliberation, we decided on a course of action, made the arrangements and took our calculated leap of faith into our future.
We drove 600 miles from our home in Canada to Dr. Robin Cotton at the Children's Hospital Medical Center in Cincinnati. Other than visits to Joe's grandparents, this was the first long trip with all of our equipment and supplies. So it was a relief for us that the bellboys at our hotel literally did not bat an eye at our two elevator loads. They were equally unfazed when we kept blowing the circuit breakers for our room each time we turned on Joe's compressor for the night, until we figured out the correct "powering up" sequence.
Joseph had a vocal cord lateralization procedure on June 18, 2001. Although we had tried to prepare ourselves, this procedure meant that Joe's beautiful, strong voice was, for some time afterwards, reduced to a whisper. Dr. Cotton also told us that Joe would probably require a second surgery to correct the significant collapse he had at his stoma site. This was a significantly more involved tracheoplasty reconstructive procedure requiring a rib graft and intensive care unit stay.
We made a second trip to Cincinnati six weeks later and on August 2, 2001, Joe was decannulated! He did amazingly well and was awake during his entire 6 day ICU stay with a NJ tube in place for feeding in addition to the nasotracheal tube. We knew Joe was a stoic little man but even we were amazed when he started taking wagon rides and walks around the ICU with all the paraphernalia, including the nasotracheal tube. When the nasotracheal tube was pulled on the 5th postoperative day, he needed only one racemic epinephrine treatment and he was on his way, discharged from hospital within 2 days. At the follow-up bronchoscopy one week later, all looked good --- the graft had taken --- and we were sent home. We were told that no follow-up bronchoscopies were needed unless he developed any concerning symptoms. It seemed almost beyond our comprehension that this was it - the last scheduled bronchoscopy - and that our little boy had done so well. It was the happiest day of our lives.
So it is the beginning of December now and Joe has been in preschool for about a month. We have donated the medical equipment and returned supplies. We are gradually making our plans.
Joe has no problems eating or drinking; his voice is good though still a little hoarse compared to his "old voice", but it continues to improve and we understand it can continue to improve with time; his exercise tolerance is good though he breathes a little heavier than your usual 4 year old when very active. He has done great with colds so far though we found with the first cold he initially didn't clear his throat as often as you or I would - this has improved too. We had a scare a month ago at the end of a cold and after exposure to a dog - itchy red eyes, itchy skin rash, soft stridor and indrawing - which resolved with pulmicort and one dose of decadron. It has not recurred since and laryngoscopy showed no problem. Allergy testing revealed marked allergy to dogs, rodents and horses. With his latest cold that turned into bronchitis, he did have to go on pulmicort at the very end of the cold for a few days as he was getting hoarse and having difficulty clearing his secretions. This settled him quickly.
When Joe returned home after his last surgery, he told us every night as he would lie in his bed to go to sleep in his ever-so-quiet room, "I'm all better now. My breathing is all better now." For a short time, he needed reassurance from us that all was okay. He talks very little of his hospital experience now, but every so often he'll mention something like, "I don't need a tube anymore" or "I don't need a water machine anymore" or "I don't need to be suctioned anymore" and his "old machines are helping other boys and girls now". There are so many subtle, positive changes in Joe, which we never anticipated.
We remember so well watching other parents in the neonatal intensive care unit taking home their babies one after the other and we stayed behind. And we remember hearing of the few children with trachs in our community being decannulated one after the other. And we remember thinking, when will it be our turn to move on and not be the ones left behind again. In the wake of September 11th, we are saddened as we attempt to reconcile our small family's personal good fortune with the changed fortunes of the world we now live in.
Our most heartfelt thank you goes to Dr. Robin Cotton and the ENT team; the ICU staff; and the child life workers at Cincinnati Children's Hospital; and to our own pediatric ENT in Canada who has cared for Joe since he was born, who continues to care for him now and who has always supported our decisions to do what we thought was best for Joe. Thank you so much.
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post-decannulation
Joe, Jane and Dave
