THIS BIG DREAM OF THEIRS CAME ABOUT AS THEY DISCOVERED THAT JUST LEARNING TO CARE FOR THE MEDICAL NEEDS OF THEIR MEDICALLY FRAGILE SON, BENNETT, WASN'T ALL HE HAD TO TEACH THEM. This page was launched to honor the legacy of our son, Bennett Buckelew. Bennett passed away at 13 months old on February 25, 2014, due to respiratory complications brought on by viral pneumonia. His complete story can be
found below, as well as on his page http://Facebook.com/TeamBennettHeroes.com. Our son Bennett was born full term on January 9, 2013. We went into the hospital that day to have a C-section because he was breach. We were so excited to meet our sweet little boy. We were first told he was going to the nursery and would be back shortly to eat. Then we discovered he had to be taken to the NICU because of respiratory issues. We found out the severity of it all in the days to follow. As it turns out, starting with his brain continuing down his spinal cord, our precious Bennett was very underdeveloped. We did not know this before his birth. The only explanation the doctors could offer us was somewhere between weeks 5 and 16 there was a deceleration to his cell growth. No diagnoses was ever given. The doctors said it was severe and would cause life-long disabilities. We would only know to what degree in time. He was 13 months old and his behavior was that of a sleeping newborn baby who can’t see or hear and whose ability to interact was very limited. We discovered Bennett's neurological diagnosis for his seizures was infantile epileptic encepholopathy. Specifically the doctor thinks Bennett had Ohtahara's Syndrome due to the "suppression burst" EEG. There was nothing that could be done to help him other than for us to provide the best care possible, love him with all we had, and hope. We are currently awaiting genetic testing results to verify that he had Ohtahara's Syndrome. It will also guide us in determining if Bennett will every be able to be a big brother. There were also some less critical issues like difficulty regulating his body temperature, his hips, legs and ankles not relaxing down into a neutral position, and the hole in his heart that hadn't closed yet. He never developed the suck, cough, gag, and swallow reflexes, and he only had one functioning kidney. Since he couldn’t swallow his mucus and secretions, they had to be suctioned out of him frequently so he could breathe more easily. This posed a threat to the safety of his airway due to the likely-hood of aspiration and threat of infection. To help him we followed a strict respiratory therapy regimen with albuterol and mucomyst breathing treatments, CPT and deep suctioning. With his hospitalization in May 2013 he was put on oxygen with a CPAP machine which could provide peep (pressure) to keep the sacks in his lungs inflated to help him move air more easily. We were unable to take him outdoors due to the risk of infection from allergens and others illnesses. He had to be fed by a feeding pump that he was connected to via a surgically implanted gastric feeding tube and he had a nissen fundoplication done at the same time. His eyes had been examined and they were structurally sound but since he rarely opened them, we suspected that his brain wasn't interpreting what he saw. The doctor said he didn't display any reaction to light so he most likely was not processing anything he saw. His hearing was also tested multiple times several ways. Unfortunately he failed these tests. He had tubes put in his ears to insure it wasn't a fluid issue and had been referred for more in-depth tests, but it was suspected that his inability to hear was a processing issue also. While Bennett was alive we sought therapy that helped him use his brain and spine to their fullest capabilities. We had physical and speech therapy but were never able to find occupational therapy. This was a very difficult time, but we kept moving forward with the help of all our Team Bennett Heroes on Facebook and in our lives. Despite his limitations we did our best to enjoy every day with Bennett. Especially the days that he was able to tolerate being held and was able to come off the CPAP machine long enough to enjoy the “adventures” we went on. We hope you enjoy seeing the pictures of them as much as we enjoyed going on them! We know miracles can happen. We are continuing to help make amazing things happen for others. Please continue to pray for all of us as we navigate this new world. Most of all we thank you for your continued love and support! We know “Thank You” will never be enough but please know we appreciate everything you do! You are the ones keeping us going during this difficult time! Some people may say, "Why us?" Well, why not us? Look how much love we had to give him and how many people we have willing to support us. So why not us! We will Keep Moving Forward.
