Jeremy's Story: Parent's Letter Project Congenital tracheomalacia- Jeremy’s parents

Our son Jeremy was born on May 25, 2012, and what joy did it bring to hear that first cry. Almost immediately after birth, healthcare professionals became concerned about stridor, or what they described as a \"crowing noise\" as he breathed. We were sent home and told they suspected he had laryngomalacia, which was very common among infants and something he would grow out of. However, our pediatrician was concerned and recommended we see an otolaryngologist. We eventually saw two otolaryngologists before we were referred to the best at Children's National for a confirmed diagnosis.

Jeremy was just four weeks old when he met Joshua Bedwell, MD. On July 3, 2012, Jeremy went in for a direct laryngeal bronchoscopy (DLB) and the news that was shared at the time shattered our world. I can remember having to ask repeatedly what was wrong and why he was recommending a tracheostomy. Dr. Bedwell explained to us Jeremy had idiopathic bilateral vocal chord paresis and congenital tracheomalacia. It was a very unexpected outcome despite the many times Dr. Bedwell tried to prepare us for such a recommendation. As parents, we wanted to be optimistic and search for hope against the odds that he would not need a tracheostomy.

After Dr. Bedwell explained to us how Jeremy's vocal chords were weak and showed us how severe his tracheomalacia was, we knew having a tracheostomy was a reality we were going to have to grasp. Dr. Bedwell reassured us he would follow him closely and was very patient to answer all our questions and concerns. Dr. Bedwell offered us a lot of knowledge as well as reliable resources to learn more about tracheostomy care. In addition, he had us meet with the trach nurse Hannah Greenlick, RN, who also has been a wonderful resource along the way. On July 9, 2012, Jeremy went in for his tracheostomy procedure. Our spontaneous lifestyle for travel and leisure was put on hold for a while and we adjusted to our son’s critical, but safe, new airway.

So many questions and concerns came to mind as parents with a child who had a tracheostomy. Neither one of us had any clinical experience beyond the occasional "boo-boo" cared for by a Band-Aid and a kiss. When we were told we would become experts in CPR and trach care, we were overwhelmed with the task. The thought of us actually replacing a trach each week was scary and daunting. However, after completing the trach education partnered with Hannah and the nursing staff at Children's, we did indeed become experts.

Hannah not only taught us how to care and become experts ourselves on tracheostomy care, but even went above and beyond to help us relate our story to Jeremy's two-year old sister Katelyn. I was so afraid our daughter would not understand that our son's tracheostomy was something only her parents, doctors, and nurses should touch. To help Katelyn relate, Laura Cronin with Child Life stepped in and wrote a book about Jeremy's surgery for Katelyn. Hannah took her favorite baby doll, Baby Kate, and gave her a 'tracheostomy' just like her baby brother. This helped us teach our daughter the many things we do to care for her brother in ways she could relate.

Along the way we had many ups and downs. Jeremy seemed to get tracheitis every three weeks and he demonstrated poor weight gain; later diagnosed as failure to thrive. On our follow-up with Dr. Bedwell on September 7, we were told Jeremy's vocal chords were working. We were shocked and so elated we left that day crying and calling everyone we knew. The next step was huge and would be capping trials on October 3.

At just four months old, we were still optimistic he would pass the capping trial. After all, despite his setbacks he had pulled through and surprised many of us. The first attempt he became tired and his body was exhausted after two hours. The second attempt was an almost immediate failure the next day and we knew he just wasn’t ready. It was also during this admission that gastroenterology, who had also been following him, recommended a nasogastric (NG) tube for continuous 10 hour feeds that would eventually increase to 24 hours by November 2012.

On December 21, we met with Dr. Bedwell and scheduled our next capping trial for January 2, 2013. When Dr. Bedwell arrived in the consultation room after surgery, we held our breath for the news. We had no idea what to expect. Dr. Bedwell explained to us he was very pleased with what he saw. The tracheamalacia had improved and he had removed quite a large internal granuloma above the trach, which was obstructing the upper airway. After surgery, we began capping trials again, which were scary because of the recent failure and the reluctance to get our hopes up. However, Jeremy passed his capping trials with such success that he was decannulated just two weeks later, on January 16.

Now looking back, we learned so much along this journey. We witnessed so many precious miracles that as parents of faith, we could not have been more blessed. We found the power of prayer during this time. No one expected our son to tolerate a speaking valve at eight weeks. It also came as an unexpected surprise for his vocal chords to be repaired and working only two months after surgery. But the most exciting miracle was seeing our son decannulated at seven months, which we were told was rare.

Children's always treated our son with individualized patient care, which was important to us because we had an experience where he was stereotyped as a trach patient at another healthcare facility. The physician staff at Children's always made a plan of care that was best for him; not just a standard of care. We always felt like Children's went above and beyond to meet all of Jeremy's medical needs during each visit, both inpatient and outpatient. The pediatric specialists and hospitalists at Children's always encouraged family centered care, which made us feel a part of his rehabilitation and growth. We would recommend to any parent the healthcare professional staff at Children's and especially our otolaryngologist, Dr. Joshua Bedwell. His approach and expertise is what helped bring Jeremy to a healthier and more stable place, reaching unexpected milestones that set him up for successful decannulation.

Sincerely,

Baby Jeremy's parents, Jeremy and Courtney

Treatment Team

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