Tyler Keenan Ritson
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6/8/2001 - 8/14/2002
Our beautiful son Tyler was born on June 8, 2001, at Summerlin Hospital in Las Vegas. He was full gestation and the pregnancy had been different from my first-kidney stones and cramping-but not terribly unusual. At first everything appeared normal. He was left with me for about an hour. When they took him away to give him his first bath, he turned blue for the first time and was taken to the NICU. Throughout the day, whenever he became agitated, he would cry and then turn blue and become stiff. The following day he was transferred to a bigger hospital nearby. He had many tests those first couple weeks. Everything appeared normal. His heart, lungs and brain all appeared to be normal. Tyler's pinkies on both hands were clinodactyly, but no one was terribly concerned about it. After two weeks of turning blue several times a day, they stopped feeding him by mouth and inserted a tube into his nose for formula. They all believed he had severe reflux. After two weeks of getting nowhere, they were concerned about his airway. After a bronchoscopy was done he was given a tracheotomy. His airway appeared normal, but they were concerned that it might be collapsing when he was angry and they felt it was important to maintain a safe airway. The following day he became upset and turned blue again. They feared the tracheotomy tube had fallen out so they removed it and couldn't get it back in. As they tried Tyler's heart rate plummeted and he was intubated and given ephedrine. After two more weeks and several more normal bronchoscopes they decided to leave the trach out and take him off the ventilator. Tyler suffered some lung damage because of the ventilator and had oxygen requirements almost all of his life when sleeping. After five weeks of making no progress in defining Tyler's problems we had him transferred to Texas Children's Hospital (TCH) in Houston, Texas. My parents live in Houston so they were able to take care of my daughter while I stayed everyday at the hospital with Tyler. His chromosome test came back when we first got to Houston showing that Tyler had a balanced translocation between 2 and 5. We were devastated. I was told that it was the most common chromosome issue and that most people who have it (1 in 500) never even knows it. Both my husband and my chromosomes came back normal. After a month and a half at TCH they were no closer to diagnosing Tyler and we were desperate to bring him home. In the meantime my husband had bought a house in Dallas so we could have a dependable children's hospital nearby. Las Vegas simply doesn't have what Tyler needed. They would not let him leave without a safe airway and so in an attempt to get our boy home, we allowed him to be retrached and given a g-tube. He had not learned how to eat because of having the tube for so long.
Finally, on September 12, 2001, Tyler came home (to my parents house) via ambulance. He was on a ventilator at night to allow him to rest. This was weaned within two months. The first week of October we brought Tyler to Dallas and the kids and I got to see our new home for the first time! He had nursing eight hours a day five days a week for the first couple months. After that we had three days a week. OT and PT saw him two times a week respectively. On November 14.2001 Tyler got a trach plug and went into respiratory arrest. He was taken to the hospital and was there for several days. He underwent further testing while there and seizures were once again ruled out. Our final diagnosis was Severe Breath Holding Spells. Tyler was a beautiful little boy with big blue eyes and blonde hair. Aside from the curved pinkies he had few, if any dysmorphic features. He was small, both in length and head circumference, but on the charts. He was very weak either from hypotonia or from the length of his initial hospital stay. By the time he died at 14 months he could pull up, blow kisses, clap his hands, rock to music and eat almost entirely through his mouth. He was constantly gaining ground and really seemed to be doing well! He loved to suck on the two middle fingers on his left hand. He had them in his mouth so much that he had done some temporary damage to the nail beds. He was a sweet boy who loved to be cuddled, take baths and watch his big sister. He also loved Sour Patch Kids!
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The bottom began to fall out of our world on Sunday, August 11, 2002. Tyler became agitated on a car ride home from the store. He turned blue and became stiff. This wasn't unusual; he did it daily. This time, however, Tyler didn't recover. My husband gave him breaths with our ambu bag and I pulled the car over. He was limp, blue and didn't have a heartbeat when we pulled him out of the car. We did CPR on the embankment and my husband called 911. We got his heart going again, but he wasn't breathing on his own. On the way to the hospital he began breathing on his own and crying. A CAT scan in the ER was normal and Tyler was released the following day. Little did we know that a hypoxic event could take up to 72 hours to manifest itself on a CAT scan? At home, Tyler did almost nothing but sleep. When he was awake, he would smile for a minute or two then begin breath holding until he would exhaust himself and go back to sleep. He seemed to be in pain. On Wednesday, the 14th he began having seizures and was life flighted to the Children's Hospital. They had a very difficult time getting his seizures under control. A CAT scan came back this time with significant brain swelling on the top, middle and bottom of his brain. We were told he might live if he was put on life support. However, if he did he would to some degree, probably be blind, deaf, immobile and retarded. He was none of these things prior to these events. We opted to spare our baby any more pain. He'd endured so much in his brief life, we couldn't justify anymore. We got to hold his sweet hands and kiss his beautiful face as we said our good-byes and promised eternal love. He died peacefully minutes after we signed the DNR. For the rest of our lives we will be incomplete. However, we are grateful to have been a part of his precious life. He touched and changed so many people in his life. He made a contribution. He will always be our beautiful baby Tyler monkey. We will miss his kisses and our hearts will be broken because of all the dreams we had for him that will never happen. We will always love him and miss him.
