Jameson started preschool this past September 2017. We recently had to withdraw him from this program because he was very anxious over his continued leaking of stool. Since he doesn't have regular bowel movements, he is almost always backed up. This causes stool to leak into his pull up and it is beyond his control. He is not fully potty trained and it is unlikely he will be trained by Kindergarten (or ever!) without the medical expertise of Dr. Levitt. Our goal is to have Jameson on a path to confidence over his bowels by the time he starts Kindergarten in September 2018.
Jameson began projectile vomiting at just a few hours old. He struggled with feedings immediately after birth and when he did manage to take down some formula, he would vomit it back up. Many times the contents were green. He had one bowel movement before we were sent home to begin our journey as new parents. We never imagined all the obstacles Jameson would be up against or all the struggles financially and emotionally we would face as a family.
When we got settled in at home, it wasn't long before we noticed Jameson was unable to have a bowel movement. He would scream for hours and hours. He was inconsolable. His only relief was a suppository or enema. As the weeks progressed, this problem persisted despite our efforts to help him. He went through many formula changes and had several rectal exams by his pediatrician. Each exam came with an explosive bowel movement that gave us hope he would begin having bowel movements on his own. This was not the case. His inability to have a bowel movement resulted in breathing problems, extreme stomach distention, loss of appetite and projectile vomiting around the clock. Eventually we found ourselves admitted to hospitals every few months where Jameson would undergo a bowel cleanout and we were sent on our way with the diagnoses of constipation.
Throughout the first year of life, Jameson was put through many medical tests. He was tested for pyloric stenosis, celiac disease, GERD, intussusception and abnormalities with his throat and stomach. These tests required CT scans, X-rays, biopsies and endoscopies. All of his tests came back normal. Again, doctors kept telling us he just struggled from constipation and would eventually outgrow it. We could no longer accept this diagnosis. We found Jameson a Gastroenterologist and hoped this specialist could help him feel better.
The inability to have a bowel movement continued, the tests continued, the hospital stays continued. Despite seeing a specialist, things were getting worse. The G.I. doctors put Jameson on countless laxatives as a solution to his bowel issues. It became clear we were only masking the problem and not treating the medical reason for these problems. We eventually saw two more G.I. doctors in different practices. We hoped someone could help us!
Over the next few years Jameson was admitted to the hospital for miralax clean outs that involved a tube being inserted up his nose and into his stomach. A miralax solution was put through the tube and after an ungodly amount of liquid went into his stomach, he would eventually have a bowel movement and we would be sent home. Within a few days of these clean outs, Jameson was right back to square one. He's had over 50 X-rays of his stomach. Each X-ray showed swollen intestines, an enlarged colon, a massive amount of trapped gas and stool causing him to be backed up.
Jameson's current G.I. doctor agreed there is something wrong that has been overlooked since he was born. Unfortunately, she just didn't have the knowledge to help us. This was devastating to hear but also comforting to know somebody other than ourselves believed this was not just constipation. This is what led us to research doctors all over the world to find help for our son.
We finally decided on Dr. Levitt at Nationwide Children's Hospital in Ohio. Under this doctors care Jameson will go through some testing both under anesthesia and not. He will be tested for Hirschsprung's disease through a biopsy of his rectum. Hirschsprung's disease is a condition that affects the colon and causes problems with passing stool. Its a congenital disease present at birth as a result of missing nerve cells in the muscles of a baby's colon. He will also have a rectal exam, possible Botox and anorectal manometry which measures how well the rectum and anal sphincters are working. Along with these tests he will begin a program called bowel management. The goal of this program is to get a better understanding of what measures need to be taken to ensure Jameson can have a bowel movement on his own. The program is 9 days long.
To the outside world, Jameson looks like a healthy little boy who is thriving. The only physical sign of his illness is his swollen belly that can easily be overlooked by his clothing. Unfortunately, things aren't always how they appear. Each day is emotional. We never know how he will feel when he wakes up. We never know if he will be able to eat. If he will be able to have a bowel movement. If we will end up at the doctor office or the emergency room. Jameson NEEDS medical intervention. He is sick. He does NOT feel like a normal child. Below I will explain what we will use any donations for.
Food for 4 people: approximately $1,200
Gas and tolls: $400
Rental Car: $1,000
Hotel: approximately $1,200
Unpaid time off work: $2,400
Any funds that exceed our goal will be put toward medical expenses associated with Jameson's journey.
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