PSN Issue | Parenting Special Needs Magazine

“Our Experience with Jayson Dallas Elwood”

By: Johnna & Mike Elwood

Jayson Dallas was born on a Thursday in September, 2008 at 9:15 a.m. in Kingman, Arizona. The birth at Kingman Regional Medical Center had little complication, other than Johnna experiencing a little bleeding the night before that seemed abnormal. After he was born, cleaned up, (he had an unusual amount of liquid in his mouth) and then given to us, we were transferred to our own room with him. We noticed he had a hard time attaching himself to Johnna’s nipple for his first feed. He still had a lot of liquid coming from his mouth, so we asked for the nurse and explained our concerns about these things. After taking him, they couldn’t understand what was wrong. We knew something wasn’t right with his mouth. It was later discovered that he had what was called a “Cleft Palate.” On his 3^rd day at KRMC, he was flown out to Phoenix Children’s Hospital for further examinations.

We drove to PCH that night, and he was admitted into the NICU “Neonatal Intensive Care Unit”. They immediately took him in, and began checking him. By the time we arrived (about a 3 hour drive), the Nurse Practitioner let us know that he had a cleft palate. She began telling us how things would be, how we could better understand it and how we could properly take care of him. They ran a test on him called a “Barrium Swallow” to see if he would need something in his formula to help him digest it. They also told us since he had the palate, a regular nipple would not be efficient and that we would use a special bottle and nipple called the “Haberman Feeder” to feed him. They were real precise with their teachings and made us feel real comfortable.

At PCH, there’s a wonderful place called “The Emily Center” that was created in 1990. It was named after Emily Anderson. When Emily was three years old, she was diagnosed with a rare form of leukemia. She and her family fought the disease for years, but a few days before her 7^th birthday, sadly Emily lost the battle. Her family had been frustrated with their inability to find information about Emily’s illness, as we did when Jayson was diagnosed. When they did find articles, they were often written in language too technical for most to understand. In the depths of their grief, Emily’s family vowed that families of sick children would always have access to pediatric health information that is accurate, easily understood, and free of charge. It is in this spirit that The Emily Center was born. This is a place that allows access to computers, copies, books, magazines, videos, as well as cartoons and movies for the siblings. We appreciated that last part as we had to bring Jayson’s siblings along on several occasions. Since we knew no one in Phoenix, and as this was the first time either of us had been there, we didn’t have a place to stay. The awesome social work staff at PCH arranged for us to stay at a place we’d only heard of, never really thought of, yet, had often donated our change to called the “Ronald McDonald House.” The staff was extremely kind and helped us into a room (much like a motel, but, with a more friendly environment), where we were able to rest, unwind, shower, and be fed (by their awesome volunteers that come nightly to cook dinner for the families). These volunteers are from Southwest Airlines, Wells Fargo Bank, churches, foundations, and other visiting families. They also had computers for us to continue our research while not at the Emily Center. The RMH we stayed at was the original on 5^th street and Roanoke, and we were treated like family. After about a week there, he was released to come home, even though he seemed to have a breathing problem. They said he would due to the cleft palate. Once home, we were having a difficult time feeding him and we noticed he had real problems breathing. We also noticed that he didn’t move around a whole lot. We looked around for a pediatrician that would take a “special needs” child, and had a hard time finding one, but eventually did. The doctor told us that with Jayson’s condition (Cleft Palate), he would have breathing problems like this, and it was normal. After him being at home, not eating, struggling to breath, we noticed he started throwing up his feeds. So, we took him to the ER to see what the problem was. The doctor continued to stand behind his opinion that Jayson’s condition was to blame for this behavior, and that we should take him back home. We contacted Johnna’s mom from California. We voiced our concerns that something WAS indeed wrong with Jayson. She drove 9 hours to assist us, and together we requested that he be flown back to PCH. After a little while we were granted this, and he was sent back to PCH to attempt to discover what was indeed wrong with him at this point.

It was discovered by the fine doctors at PCH, that Jayson had a particular sequence called “Pierre Robin Sequence.” Pierre Robin is not a syndrome or a disease. It is usually referred to as Pierre Robin Sequence, although it is also known as "Pierre Robin Malformation Sequence", or a few harder to say things. It is the name given to the following birth defects if they appear together: small lower jaw, a tongue which tends to ball up at the back of the mouth and fall back towards the throat, breathing problems, and a horseshoe-shaped cleft palate may or may not be present.

Jayson had almost all of these things except that his “cleft palate” was only a rectangle sized hole that started at his top gum line and went to the back of his mouth (where he does not have any tonsils). The PCH doctors advised us to have what’s called a “Lip Tongue Adhesion.” This procedure temporarily attaches the front tip of the tongue to the inside of the lower lip, in order to keep the tongue from falling back and blocking the airway. It is a completely reversible operation, which helped a little, but did not allow his airway to strengthen. He had the procedure reversed around November, about one month after he had it in. With Jayson seemingly lifeless at times, not moving any of his limbs, struggling to breath, and looking real pale, the doctors and a team called, “The Trach Team” came to us with one last possibility to improve his situation. This was called a “Tracheostomy” which is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the breathing tube and is commonly done in an operating room under general anesthesia. This was performed at PCH as well. A tube is usually placed through this opening to provide an airway and to remove secretions from the lungs. Breathing is done through the tracheostomy tube rather than through the nose and mouth. The term “tracheotomy” refers to the incision into the trachea (windpipe) that forms a temporary or permanent opening, which is called a “tracheostomy”. However, the terms are sometimes used interchangeably. We, however, simply refer to it as his “trach.” Hearing the news about this procedure and what would happen to Jayson frightened us at first. We were skeptical at that point to say the least. We spoke with a member of the Trach Team and asked if there were any other options? They explained this was one of the best procedures and one of the last chances to help him. They didn’t see any changes in the near future in his state of condition. We pondered it, spoke to others about it, and spent a lot of time in the Emily Center at PCH reading books and studies, and watching videos on children with trachs and their families. One of our nurses suggested that we take a look at a newly trached child and talk with his father about the process, as our stories were similar. After he consented, we did just that. The father seemed relieved, his child seemed happy, he had nothing but positive things to say about the procedure, the child’s status afterwards, and the staff that helped them. After hearing that, we decided that it was in Jayson’s best interest to perform that procedure on him. So, we agreed to do it. Looking back on it, it was the best decision we’ve ever made for him! Almost instantly following the procedure, Jayson began to move around, his color came back into his body, and most importantly, his breathing became easier and more frequent. We were truly grateful to PCH and its staff and the Trach Team that not only helped Jayson, but walked us through it every step of the way, assured us of everything to expect, and what the ultimate goal would be. For the first time since birth, Jayson became a playful, joyful, happy baby that seemed like he wanted to live now, a feeling that changed our outlook on a lot of things up to that point.

After moving from the PICU, to an actual room on the 4^th floor of PCH called “Trach & Airway,” we began to learn how to care for him. Both of us were real unsure and uneasy about doing the care, and when we heard we’d be the ones to change his Trach out weekly, we nearly passed out! Living in such a small town like Kingman, there isn’t a large support group for special needs children. That meant taking care of Jayson would be primarily our responsibility, and we were blown away with that fact. Our nurse, Sara Allen, was very kind to us, and explained very politely that our current feelings would soon go away and that we’d be strong and wise enough to perform Jayson’s care on daily and weekly basis without a second thought. I think we both thought she was crazy at first, but a year later, she couldn’t have been more right! Jayson’s care actually quickly became easy to do with more and more practice, with what the great PCH nurses and staff, mainly Sarah, showed us. This time around, we were sent to the RMH “on campus” which was the “newer” house, and again, the staff was so great and made us feel right at home. We were afforded the same great furnishings, however, we were right on PCH campus, so we could walk at any hour of the day or night to visit Jayson and even practice more of his care. This convenience was very crucial in our being able to learn more, and perform more of his care on a daily basis. It really allowed for us to learn more quickly. In November, we were introduced to the possibility of a nursing facility that could take Jayson out of a hospital environment and into a more relaxed home setting complete with crib, T.V., videos, and his own toys and clothes. Realizing that we were still not quite 100% ready to have Jayson come home, and were finding more and more resources to help us once he comes home, we decided to tour this facility and explore the option of moving him there. Before this happened, his weight gain was a huge problem, he had feeding tubes in his mouth and nose at different times since birth as his cleft palate did not allow him to feed regularly, and he was trying to take to his bottle once again after being off of it after his Trach surgery. The PCH staff introduced a new procedure which was called a “Gastrostomy Tube” inserted into the wall of the stomach, and in some cases, the small bowel. This allows him to have his calories without a struggle of a P.O. feed, and basically allow him to grow and gain weight. Once again, we went for it. Once again, another smart move as Jayson began to have no trouble gaining weight, and also began to take his P.O. feeds more frequent as he enjoyed the taste of his food.

We visited the nursing facility called “Hacienda Skilled Nursing Facility” and were very impressed with what we saw, however, a little cautious that there were so many other children with Jayson’s similar conditions. We were reassured that Jayson would be safe, and have the proper and appropriate care he needs. We decided that we would like for him to stay there until we were able to bring him home to Kingman with us. He moved in at the beginning of November, 2008, and remained there until April 8^th, 2009. It was great to have a place where he could be safe, taken care of, and that would allow us the proper time to get things together at home, again, including the resources that we were now able to have for him. We had a great relationship with the staff at Hacienda (including Jan Lovelady, Brian Henry, & various nurses) and their volunteers, which included the wives of the Arizona Cardinals, who took time out of their busy schedules to spend time with our children. They held them, read to them, and showed them the love we parents could not while not there. They still do it to this date. We have to add that they have a wonderful house called the “Angel House” that’s on campus (much like the RMH), where families can stay one or more nights, and visit their child or children at any time during the day or night. This is a feature that makes things so much easier on families, especially those of us that live so far away.

Once home with Jayson, resources started coming together, making things so much easier to care for Jayson. “Nursing Solutions” provide us with in-home nurses who care for Jayson during the day or night, so that we may get our daily errands done, and allow us a small break to perhaps spend with our other 3 children or even each other. Our nurses Angie and Annie are a God-send! “MIKID” is a program designed specifically for children with disabilities and their families. Our family support worker, Joyce, has been a terrific fit for our family and our needs. “DDD” is an insurance company that provides many of Jayson’s services. One service in particular is his weekly therapy with Jennifer that works with his motor skills, speech, and other developmental skills. “Preferred Home Care” is the company that provides Jayson’s medical equipment and supplies. Carl is one of the employees that comes out and checks on things to see how it’s going. He’s been great to have around. He’s very knowledgeable with the equipment’s use and care, and a few other things that pertain to a Trach child’s care. “The Pregnancy Center” of Kingman have been supportive in various ways; classes on child care, recalls on children’s items, and a program that rewards you for taking homework and tests on these informative sessions, with children’s clothes, toys, and diapers.

Our family has been real supportive of us, friends have been supportive as well. And, our community has become more and more supportive as they learn so much more about our needs and concerns. We’re glad to have the only Trach baby in Kingman, AZ. We’re very proud to have Jayson, he’s been a Blessing and without a doubt, a gift from God. He’s allowed us to become closer as a family and share in his wonderful life. We wouldn’t trade him for anything or any other child in the world!!!!