HIE is hypoxic ischemic encephalopathy. In essence it is when a baby stops breathing (for a myriad of reasons) which can lead to cognitive and physical deficits as they continue to develop and grow. Our Brady’s HIE incident was the result of interrupted SIDS (Sudden Infant Death Syndrome) when his quick thinking Grampy performed CPR, refusing to let 4 1⁄2 months be the oldest age Brady experienced.
After almost six months inpatient, now two-year-old Brady has been home for almost a year and a half. While his family is so blessed to no longer worry on a daily basis whether or not he will live, Brady’s life, his family’s life, has changed drastically. Confined to a wheelchair, but still just small enough to tote around for a bit longer, Brady has very little volitional movement and requires a mobile stander to ensure that his bones have a chance to weight bare. He benefits from therapeutic tools to alert his senses, special color contrasts to help him see and needs regular therapy to facilitate small bits of progress and prevent large areas of regression.
Due to his tracheostomy tube (trach) Brady also requires an oxygen and heart rate monitor when not being directly watched by a trained family member or home nurse to ensure that he has a stable airway. While of course he is never actually left alone, this means that if his parents are sleeping overnight (even in the same room with him) or if they need to go take care of a load of laundry, Brady has a probe that is wrapped around his toe or finger and linked to a monitor to alarm if his oxygen levels fall below appropriate parameters.
Aside from detrimental Infantile Spasms (a form of epilepsy) Brady’s largest day-to-day challenge is managing his secretions. Although his cough has become significantly stronger in the almost two years since his injury, his ability to swallow with any strength or consistency has not returned. Brady’s suction machine is the single most important piece of equipment in his life. Oral, nasal and tracheal secretions alike can cause choking, blocking of his airway and would essentially drown him if his caregivers were not able to assist him by suctioning them out for him. His suction machine is his daily life-saver.
Brady has learned to share feelings of distress with his family through vocalization but he has not yet found a way to share contentment or joy. His family’s biggest goal for Brady is to help him find a way to share when he is happy. Until that goal is reached, their daily mission is to facilitate Brady’s progress and keep Brady as healthy and safe as possible. The family is grateful that in the day and age of portable medical equipment they can plug in all that he needs and take care of Brady right at home. Part of taking care of him at home is ensuring that there is a contingency plan for maintaining care when issues with electricity arise due to a problem with the power company or unexpected weather. In transitioning home from the hospital they have ensured that Brady has continued the appropriate therapies, that they have been trained to manage his medical needs and that his home is accessible for his physical needs. The Friends of Brady have ensured that, no matter what, Brady’s medical devices will be able to be utilized when necessary even when electrical issues are beyond control.
Peace of mind is priceless but unfortunately there is usually a price tag on the road to finding it. Solutions to special medical needs often have a significant amount stamped on that tag. Finding support to ease the strain that can come along with the important precautions needed for a medically complicated child makes all the difference in creating the best life for Brady.
The Friends of Brady have collected donations towards purchasing a generator that is efficient and powerful enough to help give his family peace of mind in their home. An estimate of $12,000.00 has been given for this project and we look forward to seeing the installation completed. Thank you for all the contributions that have made this possible!
