Illness: Cerebral Palsy, Gastroesophageal reflux, Spina bifida occulta, Neurogenic Bladder, Epilepsy, Dysphagia, Kidney Reflux, Chronic Constipation and Von
Willibrands Disease
Theme of Quilt: Heavy Equipment, Machinery and Trucks - Bright Green
Biography
Before Tyler was born I had complications of pre-term labor. I was on bed rest and medications to stop my labor. He was able to hold off until I was 37 1/2 weeks pregnant. The birth went well although he was a little cold so they took him to the nursery to get warm. He came home the next day and we thought he was a healthy baby. Tyler began to projectile vomit and cry in pain. They did an ultrasound to look for pyloric stenosis which came out negative thankfully. But he continued to projectile vomit. We would take him to the ER numerous times to only be told he had a virus. The pediatrician had us begin to
bring him in for weight checks every day.When he lost 4oz overnight the pediatrician ordered a upper GI right away. The upper GI showed that Tyler had an intestinal malrotation. He had surgery at 5 1/2 weeks old to correct this. He was in the hospital for 7 days then again for another few days for severe constipation.
At 4 mos old he was diagnosed with severe reflux and was put on several meds to help.We were told he would likely outgrow it but since he didn't outgrow it by 2yrs old that likelihood was gone.
At 15 mos old Tyler was in the hospital for Pneumonia for a week. He has had a
muscle, nerve and skin biopsy, numerous bladder test and EEG's (inpatient and out).
At the age of 2 he had his first Tonic Clonic seizure. After a few more he was diagnosed with Epilepsy. And at the age of 4 he was diagnosed with Cerebral Palsy. He wears afo's and uses his wheelchair part time. When he was 5 yrs old he was diagnosed with Neurogenic bladder. His bladder has not grown and does not hold a lot and causes very high bladder pressures. When he was was 7 he had a feeding tube placed due to Failure to Thrive. He has had trouble maintaining his weight. Shortly after the feeding tube was placed he got a MRSA infection in his gtube stoma and spent numerous days in the hospital fighting it. He came home with a picc line for a few weeks as well.
When he was 9 yrs old he was diagnosed with Dysphagia and when he swallows any food or drink by mouth he produces too much mucous in order to get it to go down which leaves him sounding like he is clearing his throat. Many people mistake this for sinus drainage and many people stare while we are out if it is quiet like at a restaurant or movie. Tyler thankfully doesn't pay too much attention to them. He is on 20 hr feeds with his feeding pump as of recently.
Now at the age of 11 he will be having a bladder augmentation surgery probably this spring. The Dr. will reconstruct his bladder with a piece of bowel as well as do a mitrofanoff,and
malone procedure and possibly two more procedures as well.
Tyler is our gift from God and we are thankful he is here with us every day.
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