Peyton Chandler Theis
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Hello everyone! My name is Peyton Chandler Theis. I was born February 28, 2000 at Wesley Medical Center in Wichita, Kansas. My mom was induced at 38 weeks and I weighed 6 lbs. 4 1/2
oz. My family was in for a big surprise when I was admitted to NICU shortly after I was born because everything had gone so smooth during my mom's pregnancy with the exception of kidney stone complications.
When my neonatologist told my mom and dad that I had problems they had no idea just how many problems would be discovered during the next three weeks. Some of the problems my neonatologist mentioned included the following: a small chin, low set ears, and an imperforated anus. My parents were devastated! With each day following it seemed something else would be discovered. Unfortunately, each new discovery was not encouraging, but rather discouraging. The first hurdle would be my colostomy that would take place the morning after I was born.
My mom and big sister stayed with me during visiting hours in NICU while my dad returned to work and my big brother went back to school. My dad and brother would visit me on Wednesday evening and on weekends. The Friday after I was born was an eventful day. My mom and sister were thrilled to see me laying on my tummy, eyes wide open, and no ventilator. What a big boy I was! Within five minutes my oxygen level dropped drastically and I was immediately reintubated. I believe this was the same evening my mom
thought a nervous breakdown was approaching!
The next day my neonatologist told my parents a tracheotomy might be necessary. My parents nightmare became reality the following day when a second opinion indicated the need for a tracheotomy. It was believed that because of my small chin my tongue had a tendency to push against my throat blocking my airway. Five days later I had a tracheotomy. My parents were in disbelief that a tiny little guy like me would have to have two surgeries in less than two weeks. My mom was extremely nervous about the tracheotomy; however, when she saw me after surgery she know the tracheotomy was the right choice. My face was no longer covered with tape that tore at my skin, there were no more tubes down my throat, and I could actually open my eyes. I think they thought I was pretty cute!
The suctioning of my tracheotomy was a big step for my mom. You see my mom is a school teacher and she always swore that the medical profession would be her last choice for a career opportunity. I guess God must have thought she could handle me and my trach because before we went home she was demonstrating general suctioning, deep suctioning, and the changing of my trach.
It was week three that my neonatologist and surgeon recommended my parents agree to a feeding tube so that I would grow. I was only able to eat 7-10cc's of formula from a Haberman's bottle. Once again, I think my mom wanted to throw her hands in the air. After all, it is not everyday that you hear about a baby that doesn't know how to drink from a bottle. The speech therapist and my mom would work with me once a day to see if I would learn to drink from this special bottle and believe it or not but 3cc's brought lots of excitement in NICU on my first trial day.
My parents were feeling pretty good about things at this point. My colostomy could be reversed some day, my tracheotomy might possibly be needed until two to four years of age, and my ears were a little deformed, but they were beginning to grow on my parents. I think they began to realize that my ears were the least of their worries. It was the following week that absolutely overwhelmed, horrified, devastated, etc...my parents. They were told that I was nearly absent my corpus collosum, and I was profoundly deaf. This was a little more than my parents thought they could handle. I believe my mom is right when she says, "Peyton has problems from head to toe!" The medical professionals were even dreading having to tell my parents their newest discovery. I now had a list of problems including: 1) nearly absent corpus collosum, 2) cleft palate, 3) small chin requiring a tracheotomy and feeding tube, 4) inner and outer ear malformations causing deafness, 5) mild facial palsy, 6) Duane Syndrome (bilateral), 7) imperforated anus requiring a colostomy, 8) minus one rib, 9) hand deformities, and 10) club feet.
Even though my list of complications astonishes most everyone I meet, my family absolutely adores me. I am a terrific little boy. My parents want the best for me and are hoping that anyone who reads my story will notify them immediately so that they might learn new ways to help me through the many obstacles I am challenged with. If you know of any other child who suffers from medical problems similar to those of mine please let my parents know. My mom has done as much research as there is time for, but she knows there is information that we have yet to discover. My mom thinks I have several characteristics of Mobeius Syndrome and some of Golden Har's Syndrome. My chromosome test was normal. Don't hesitate to email my parents a
ctheis@cyberlodg.com or call (620) 886-3401. They will be glad to return your call.
Love,
Peyton
Update - January 2002: Peyton has had a lot going on this past year. He had his cleft palate repaired by Dr. Peter Witt at the KU Medical Center in Kansas City in April. The surgery went great, but later Peyton developed a clot in his trach and he began to turn blue. The nurses and respiratory therapist sent out the code blue alarm and doctors came from everywhere. They pulled his trach and a clot popped out of his stoma. He was so sedated from the morphine that he couldn't even seem to help himself. Peyton was then moved to PICU for four days so that they could keep a better eye on him. He ended up getting fluid in his lungs and blood in his stomach. He absolutely did me in! It seemed like forever before he would crack a tiny smile. I can honestly say I was not dreading this surgery at all. I thought we would be home in a couple of days. I did not expect the large amount of blood that would come from his nose, mouth, and trach. A bronchoscopy was attempted; however, we were told Peyton basically had no airway!?
Peyton's next adventure was to Oklahoma City to see Dr. Jayesh Panchal about a jaw distraction. It was decided that this procedure would not benefit Peyton. Dr. Panchal was unsure what the cause of Peyton's breathing problems, but he didn't believe it was entirely PRS. We are still waiting on opinions from other medical professionals. This is one of the most discouraging issues we are facing.
In July we headed to St. Louis to the Shriners Hospital and then on to Iowa City for a cochlear implant evaluation. The trip to the Shriners Hospital was awesome. This group of extraordinary people treated us with such care and concern. I can't think of any type of work that could be more rewarding than spending every minute of every day helping special children. The medical professionals did not feel Peyton was in need of any surgery, but rather suggested being patient and let Peyton develop at his own speed. He was given AFO's and then the OT made him hand splints. Proper positioning was stressed by the team as well. Once returning to KS Peyton attended a wheelchair clinic and received a stroller type wheelchair six weeks later. The wheelchair has been a tremendous help. No one understands how difficult it is to take a child to two or three doctor appointments in one day and still carry a suction machine, oxygen, an extra equipment bag, a diaper bag, and a baby who can't support himself. I am so thankful for the nurses Peyton has been so fortunate to have the past two years. They truly are angels in disguise! I usually feel like I am sweating by the time I get to the appointment desk. I love it when they ask for my insurance card that is in my purse out in the van in the parking garage. You see I was thinking how much easier it would be for me not to have to worry about the whereabouts of my purse. I am catching though, I now know my billfold fits perfectly in the side pocket of the suction machine bag.
The trip to Iowa City went good also. The doctor was running two hours behind and we had a plane to catch so we did feel a little rushed. Dr. Bruce Gantz's staff was very attentive and energetic, but we felt more comfortable with Dr. Thomas Kryzer in Wichita. I seem to like those doctors who take a special interest in my son. We are so thankful we made the right decision as the rehabilitation will be very time consuming.
Peyton has spent most of his fall months attending PT, OT, and ST. He has PT in our home twice a week and OT and ST once a week. He also has the benefit of a nurse in the home while I work that is doing therapy all day long. Peyton always has his bath in the morning so that he gets a new colostomy bag. He usually is in a big hurry to eat. His regular breakfast includes one cup of cereal and one half of a banana. He then has a little time to digest before he begins limb shaking, deep pressure massage, and brushing. His stretching and exercises are what really irritates him. I don't like making him cry so I usually let him play instead. I will have to toughen up during the summer since I will be the main person responsible for his therapy. Right now his nurses give him his workout during the day. I can't tell you have lucky we are to have such dedicated and caring nurses. I know Peyton adores both of them!
Peyton's last medical treatment was his cochlear implant in December. He did extremely well. Dr. Kryzer said everything went as planned. My husband was shocked since it never seems like things go smooth where Peyton is concerned. He had trouble coming off the oxygen once out of surgery so we were once again transferred to PICU. We spent a couple of days in there before bringing Peyton home with oxygen. We have adjusted, and besides running out of room in our van we still get around without too much stress.
Peyton is a lot of work, but he is ten times the joy. He has a crooked little smile that can give a stranger goose bumps. His siblings give him a lot of attention. Especially his almost five year old sister. She hauls him around everywhere and he just smiles. He is doing better at sitting. He can move his hands around without falling over. He is also getting into crawling position and will be getting a stander soon. His neurologist feels oral muscle relaxants and injections are not necessary at this time. I have always had a tremendous amount of patience, but believe me. Peyton's development is in double slow motion. I love it when he holds his hands up for us to pick him up, or when he tries to pull my food off of the table. I would have told my other two children "NO, NO", but with Peyton I am shouting, "Look at this boy reaching for what he wants!"
Peyton is still an extremely good boy. He has a wonderful disposition and is spoiled. He has terrific nurses who are responsible for his continuous improvement. They are not just doing their job, but a lot of heart is evident in their caring for Peyton. Peyton's siblings are also two of the most loving little people he could ask for. They kiss and hug him. His Dad is also one of his favorite people. I think this is because his Dad doesn't make him eat vegetables or do therapy, but instead takes him to the basement for Sunday football games and rough play. His Grammy is his most treasured buddy; however, she will soon be moving to another city. He wiggles all over when he sees her. He reaches for her and shakes his head "NO" when we try to take him from her. He even cries when she doesn't pick him up. She loves it!
Peyton's implant was programmed January 10, 2002. We have not seen any positive responses yet. We are told to be patient and we are doing just that. We recently saw a pediatric pulmonologist. We have another swallow study and a sleep study scheduled. If anyone has had a child who has trouble with oxygen saturation while sleeping please contact me. I would like to hear from anyone who might be able to give as a suggestion or two. I can be reached at theis5@sctelcom. net or ctheis@cyberlodg.com.
Cheryl (Peyton's Mom)
