Brayden's Trail Of Strength



Was born on January 10, 2011 @ Arnot Ogden Medical Center, unexpectedly at 27 weeks,  weighing in at 2 lbs. 5 oz.  Within seconds we knew something was wrong as we watched the Doctor and Nurses begin to preform CPR.  That didn't seem to work, so they  intubated him. Once that was done, they wheeled him away.  It was an hour or so, before a Doctor came in and informed us that we had a very sick baby.  They had to place him on a ventilator and had to put chest tubes in his lungs.

Right from the beginning, Brayden was a fighter.  As each new medical concern came to light, he would show us how resilent he was.  So, when we learned that he had a very rare genetic disorder called Ring 18, we knew we had to be strong.  Brayden couldn't tell us what he wanted, but each day he showed us by living. 
Brayden stayed in the NICU until March 15, 2011, then was transfered to the Janet Weis Childrens Hospital in Danville, Pa.  at our request. Here they specialized in Feeding Problems and had a Feeding Team to help with Brayden's feeding difficulties.  During his stay in the NICU, he was diagnosed with Atrial Septal Defect, Congenital Pulmonary Valve Stenosis, Ventricular Septal Defect, and Esophageal Reflux Disease.  Before he was discharged in April 2011, he had a Nissen Fundoplication done, a G-Tube put in, and had a balloon procedure done on his Pulmonary valve.
    During Brayden's first month at home, he was doing well.  We had him feeding from a bottle and he was putting weight on.  On June 20, 2011, Brayden was Life Flighted to Geisinger Medical Center in Danville and was diagnosed with Rhinovirus Infection which caused him to have Respiratory Distress Syndrome and Bacterial Pneumonia. If it had not been for our quick response to his sickness, we could have lost him.
    Since then, Brayden has been diagnosed with Lung Disease, Patent Foramen Ovale (a hole in his upper heart chamber), Eating Disorder, Failure to thrive, Constipation, Excessive Gassiness, and Global Developmental Delay.
Brayden continues to have issues with weight gain due to food intolerance.  At 16 mths he has weighted in at 13 lbs and 9 oz. His younger brother, Brycen, is 4 mths old and weights 15 lbs.  Eventhough he struggles with feeding problems, he is such a happy, joyous baby. He loves his red dog binkie, playing with his big brother Brandon, playing his piano, listen to his lit' lion play music, and watching Mickey Mouse Clubhouse.
Brayden has brought such joy to our lives, its easy to forget that he has health issues. But then something happens to remind you and all you want to do is pick him up and hold on tight.
Brayden is now 2 yrs old and has made alot of progress through the winter months.  The biggest news that we received before Christmas was that the hole in the upper part of his heart had closed!  As of March 2013, Brayden is now 29 inches and weights 18 lbs. and 6 oz.  He is still our "lit' man" being smaller than his 1 yr. old brother, Brycen. 
Brayden is now 3 yrs. old, weighting 27 lbs and is 37 1/2 inches long. He had a mild flu season and was only hospitalized once. He went in to get tubes in his ears, but only got one due to his left ear canal being too small.  He struggled coming out of anesthesia and kept desating even on oxygen.  Because of his medical history, they kept him overnight on O2 then discharged later that afternoon.  Brayden continues to get all liquid intake via his gtube, however he does eat pureed food by mouth.
Brayden continues to love Mickey Mouse Clubhouse and he is never without his binkie! One of his new joys is riding his scooter while someone pushes him around. Brayden is a blessing and continues to bring joy to our lives.
    On July 15, 2014, Brayden had a swallowing study done. He was doing good eating pureed food by mouth so feeding team gave us the go-ahead to practice with small amounts of water by mouth. On July 22, Brayden had a sleep study done and learned that he had sleep hypoxia. Which is low oxygen levels in his blood during sleep. He was prescribed 1/2 liter of oxygen while sleeping.
    As the months progressed, Brayden continued to have episodes of really low desaturations of oxygen. His ENT doctor felt it would benefit him to have his tonsils and  adenoids removed to open his airway. Brayden had them removed on September 17 and also had a ear tube put into his right ear canal. His left ear canal was too small to get an ear tube in. He spent the night, due to having trouble coming off the anestesia.
    By October 2014, Brayden had continued to get worse with his oxygen levels, to the point of needing oxygen full time. He was needing up to 3 liters at night time. Brayden went to see his pulmonary doctor on October 21 and was admitted.  We learned that he had pressure in his heart, which had caused his heart to become enlarged. He was also aspirating his liquids into his lungs making his lung disease come back. Then on top of all that, he had the rhino virus (common cold). Brayden stayed at the Janet Weis Children's Hospital until October 29. After discharge, he was placed on 1 liter of O2 at all times and went back on Viagra for the pressure in his heart. 
    On November 12, another swallow study was done and we learned that he had a delayed swallowing issue with liquids. He could control his pureed food because it was a thicker. Liquids traveled faster and he couldn't control it. Resulting in him aspirating it into his lungs. We were given packets of Simply Thick to mix with his liquids. We decided that we would hold off on any liquids by mouth until he got stronger and we passed the flu season. 
    As of June 2015, Brayden has been doing well. Weighting in at 32 lbs. and is 39 inches. He made it through the flu season with no more hospitalizations. He is still on 1/2 liter of O2 but the pressure in his heart has decreased. He is still monitored every 4 months because the pressure is still higher than normal.  He is also back to very small amount of water via mouth. His stats are monitored on a daily basis to help monitor his O2 levels and heart rate.
    Brayden is growing in so many ways and is developing a personality that brings smiles to our faces! He keeps his nurses and therapists on their toes!  Mickey Mouse Clubhouse is still his favorite show but he has branched out to watching Little Baby Bum Nursery Rhymes with his younger brother, Brycen.
     My little man is growing! He is now 5 years old, weighting 45 lbs. and is 48 inches tall. I know that's pretty small for a 5 year old, but he would be smaller if it wasn't for his Growth Hormone Shots!
     Health wise, Brayden was up and down with ear infections this winter. On March 6, 2016, we traveled to the ER in Danville to see why his oxygen level was so low. They did blood work and sent us on our way, with a follow up appointment the next day. Through the night, Brayden continued to require more and more oxygen. By the time we attended his appointment, he was at 4 liters of oxygen. The doctor felt he should be admitted, so we waited a few hours for a bed to become available on the children's floor of the Janet Weis Children's Hospital, which is part of Geisinger Medical Center. He was such a big boy riding in the ambulance over to the hospital! I was so happy that the doctor made the call to admitted him, because within 24 hours he was diagnosed with RSV and Pneumonia! He was transferred to the Pediatric ICU the next morning due to his oxygen requirements being 30 liters! This was unheard of in a 5 year old! It was scary, tiring, and stressful to see him struggling! We spent 9 days in the PICU and 2 days on the children's floor. Thanks to the awesome doctors, caring nurses, and his wonderful specialists! 
     It is now April, and Brayden is still doing great! We are looking forward to a wonderful summer and hope to get some traveling time to Knoebles Amusement Park this year! I really think he will enjoy the rides! Thanks for all the support and hope to see people at his event!