Upcoming Diaphragmatic Hernia Repair Surgery

4/17/2019

Today, with two amazing children, and one having profound disabilities, our time is more precious than ever. We are lucky to be blessed with a healthy nine year old boy, Brody, and a four year old boy, Caleb, with special needs. Both will be another year older in July. They make our days super busy and we wouldn't trade it for anything - as with most families, our days are spent working and our nights are busy conquering homework and transporting Brody to and from sports practices. In addition, caring for Caleb adds a few dimensions that make our nights a little more hectic. We are constantly tending to the pulse oximeter alarm that monitors his heart rate and oxygen saturations, we administer medications, inhalers and tube feedings, practice the many exercises that his therapists recommend, and attempt the daunting task of feeding Caleb by mouth. We must also keep up with scheduling his therapy and follow-up appointments with his general pediatric surgeon, neurosurgeon, pulmonologist, cardiologist, gastroenterologist, otolaryngologist, neurologist and ophthalmologist. Although very different, both boys are our superheroes! Each day they show us how to be brave, how to get up and carry on, no matter how low we feel or how tough things might be.

Caleb has been doing amazing; he is always smiling, he claps, he giggles, he's ticklish, he gets excited, he gives high-fives, he watches cartoons and although differently than other toddlers his age, he loves to play. He is the happiest, toughest and bravest little boy we know. That being said, we as parents will face one of our biggest fears again Tuesday, June 11th, as we watch Caleb enter the operating room to undergo his 13th surgery. Two of the best surgeons at Johns Hopkins Hospital will team up to perform a left thoracotomy procedure to repair his recurring diaphragmatic hernia. This will be a challenging task as most of these repairs are performed through the abdomen rather than the chest. Since August 2015, just a few months after Caleb’s 3rd repair, we learned that he had re-herniated again and a portion of his spleen, bowel and pancreas had migrated to his chest. Also, his shunt tubing that was placed within the fluid-filled ventricle on his brain and passes under the skin on his right side resides in his left chest rather than ending in his abdomen cavity as it should. Although Caleb's doctors were very concerned, he was stable and they wanted him to get as big and strong as possible before undertaking another major surgery to repair the hernia. The scheduling of this surgery happened very fast as we learned that Caleb’s surgeon at Hopkins is taking a head position at a children’s hospital in New York. A CT scan was ordered to check the status of his hernia and determine who would take over Caleb’s future care. The scan showed that the cerebrospinal fluid (CSF) draining in his chest from his shunt is creating a large bubble, which is preventing his left lung from growing and expanding. The general surgeon and pulmonologist feel that this could be the reason Caleb still requires oxygen around the clock. Although I knew this surgery would happen at some point, I have dreaded it for almost four years. Going in and draining the fluid from his chest and placing the shunt tubing back in the abdomen is the easy part, the complication lies in finding a solution to patch the diaphragm in a way that it will remain closed and all of the scar tissue from the previous surgeries makes this extremely difficult. Based on their experience with subsequent surgeries for children with CDH, the recovery time could be several weeks.

This past April, x-rays of Caleb’s pelvis and spine indicated that he also needs total hip reconstruction surgery to treat his subluxation, which occurs when the ball of the hip progressively moves away from the socket. Progressive displacement of the hip can result in pain with motion, increasing deformity of the lower extremities, difficulty with tolerance of walking or standing, and difficulty in positioning. We do not believe this is causing Caleb any pain at the moment, but we have noticed that his left leg is shorter than his right leg. This surgery will be another major undertaking for him once he fully recovers from his hernia repair and will require six weeks in a spica (body) cast and typically six weeks of inpatient rehabilitation at the Kennedy Krieger Institute.

Of all of Caleb’s surgeries, I have struggled with these the most; not only because of the complexity of them, but because they come at a time when he is doing so well. We do not know what the future holds for Caleb as he is non-ambulatory, non-verbal, g-tube and oxygen dependent, still in diapers, and developmentally only functioning at maybe a one year old, but he is making huge strides as a result of all of his therapy sessions. He has mastered sitting from a laying position, kneels at the step, stands and takes steps with his walker, and can make a few motions in the crawling position; however, he is very stubborn and would much rather scoot from place to place on his back. Feeding Caleb by mouth has been one of our toughest tasks to date and after a lot of hard work, we are making progress. He is now typically eating 8-10 ounces of puréed food each day and this has allowed us to cut out one of his tube feedings, which is very exciting. Also, to help with his mobility, we fought with the insurance company for several months and they finally approved upgrading his crib to a SleepSafe twin bed that has padded sides, inclines at the head and feet, and can go up and down to help perform his daily care. Caleb is truly an inspiration to everyone he comes in contact with. His smile is contagious, his giggle can make you laugh from across the room, and the happiness that this boy casts on our family and others is the best. In Caleb’s world, there is no sadness, there is no evil, he doesn’t throw temper tantrums and, as crazy as it sounds, Caleb is happy 99% of the time and we are most thankful for that.

Brody does not always get the recognition he deserves. He has worked really hard this year and will soon be finishing up 4th grade. He has been very busy with his travel teams for soccer and baseball, but regardless of how hectic things are with homework, practices and games, he almost always finds time in his day to play with Caleb and Caleb absolutely lights up when Brody is around. He has and will continue to learn a lot of life lessons from Caleb…some of which I wish he didn’t have to learn at such a young age. He has cheered for Caleb through tough therapy sessions and has seen first-hand just how far he has come. Unfortunately, he’s also watched Caleb struggle through sicknesses, recover from surgeries, had vacations canceled and events we couldn’t attend as a family because it wasn’t practical for Caleb to go. As a parent, you try to limit the negative lessons, but life with Caleb is sometimes unpredictable. We have tried to teach Brody to see joy in the simplest of things, to celebrate every achievement of his little brother, no matter how small. He’s adjusted his expectations to fit what is possible, and not what is so-called "normal” and he’s learned to love Caleb without expecting anything in return since Caleb cannot show or tell him. Brody whispers "I love you" to Caleb all the time, tucks him into bed each night, gives him kisses on his forehead, rides him around in the motorized 'Cadillac', and helps carry his supplies to and from the car when we decide to venture out of the house. As Brody would say, Caleb is “special needed”, but he loves him all the same. He simply is the best big brother.

The most important thing I have learned from Caleb is to try to always live in the present. My mind often races ahead and I am scared of what the future holds for him and myself as a parent, but worrying about the future doesn’t help me in any way!  So, even with this stint of bad news, we are staying positive and taking one day at a time. We have learned to slow down and appreciate every milestone for the huge accomplishment it is, and we have recognized that when times are incredibly hard, we keep going long after we ever thought we could.  Caleb often reminds us that life can be stressful, crazy and a bit unpredictable, but he is also a constant reminder that life is precious.

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I will continue to dedicate this blog to my sweet mother, Janis Doten, who passed away suddenly on December 2, 2017 at the young age of 65. She always said Sundays were for RAVENS football and the day she got her 'Caleb' fix of snuggles and play time.