Our Son, Hunter Keith Smith, was born on April 18th 2016, at Cary Medical Center. He was a beautiful boy weighing 7lbs 8oz, with a head full of beautiful dark hair. When Hunter was only three days old we had out first in hospital stay at Barbara Bush Children’s Hospital for hypotonia. The doctors were unable to find anything wrong and discharged him only two days later. Hunter had eating difficult
ies, which led to poor weight gain. At the beginning of July he stopped eating and we made our second trip to Barbara Bush, where we stayed for two weeks. Once again, he underwent a number of tests and had a NG tube placed to help with weight gain, which eventually led to a Mic-Key button before we went home. After a number of tests led nowhere they decided to do a muscle biopsy to see if he had Muscular Dystrophy. The muscle biopsy ended up coming back inconclusive. In August the humidity started effecting Hunter and we ended up taking him to the local emergency room due to difficulty breathing. They transported us back to Portland for another stay. They did a bronchoscopy, which led to us learning that Hunter had Bronchial melacia in his left lung. His low tone causes his tongue to obstruct his airway and makes it difficult for him to breathe. We were then sent home with more the equipment to monitor his oxygen levels and provide him oxygen. As Hunter started gaining weight it became more difficult to keep him in a position that allowed him to keep him oxygen levels up and by the end of September he required oxygen full time. Throughout October we went to a lot of appointments in Portland to the many specialists that were working with us to help Hunter. Even after completing extensive genetic testing on Hunter, they were still unable to diagnose Hunter’s condition. Due to the symptoms and his regression they informed us that his life expectancy would be shortened. Doctors believed that Hunter would not live to see his first birthday and that making it to November would be difficult for him. Of course as parents we didn’t want to believe this was true and with not noticing signs of progression we were praying they were wrong. We continued living our lives enjoying the time we had with him. At the end of October we had another short stay at a local hospital due to an infection and needing antibiotics. Little did we know we would have less than a month left with him. On November 17th we took Hunter to see his pulmonologist. The drive has always been hard on Hunter, but this one is particular was definitely the hardest. The positioning in his car seat made it difficult for him to breathe. We had to pull over many times and take him out of the car seat so we could bring his oxygen level up. It took Hunter a couple of days to recover from the big trip, with many treatments. On November 22nd we packed the car to make another trip to Portland to see his geneticist. Right as we were getting ready to leave Hunter started having trouble breathing and we had to increase the amount of oxygen he was getting to keep his oxygen level up. We figured he must have another respiratory infection brewing so we called an ambulance to transport to the hospital. Hunter progressively got worse and ended up being intubated and had to be flown by life flight to Portland. We knew there was a very high probability he would not be able to come off the ventilator. Our pulmonologist met us in the ICU there and had a very long discussion with us about how Hunter’s condition has gotten much worse. We just prayed that what we knew deep down was not true. Hunter was doing well overnight on the ventilator, but by mid-morning they told us that he would live. Our only wish was to take him home one last time and the amazing staff at Maine Medical Center made this happen. A doctor who had only worked with Hunter that day offered his time and agreed to fly Hunter home with us. The next day, life flight flew us home to Caribou and then we were transported to our house by ambulance. When we got there our family and priest were there to support us. The medical staff took Hunter off the vent and he peacefully passed in our arms. The support we have had from people throughout Hunter’s journey was amazing and has been overwhelming. It was with this support that we were able to give Hunter every last chance and provide him with everything he needed to be as comfortable as possible right to the end. There are many families out there that are also going through what we did with Hunter. While you are in the midst of caring for a young child there isn’t always enough time to ask for help, but it is important to our family that we be able to reach out and help these families in need. By doing so we would like to keep Hunter's spirit alive.
