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Get Jameson to Nationwide Hospital

$5,050 of $6,200 goal

Raised by 42 people in 11 months
Our 4 year son, Jameson, has been in and out of doctor offices and hospitals since he was born.  He is unable to have a bowel movement without the help of laxatives and enemas. The purpose of this GoFundMe  account is to raise the money needed to get Jameson to Nationwide Children's Hospital in Ohio. He will see Dr. Levitt who is known around the world for his expertise in helping children with bowel issues. He is a colorectal surgeon. Getting to see Dr. Levitt will give Jameson a chance for answers and a better quality of life. 

URGENCY:

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.

HISTORY:

 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.

THE DECISION:

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.

FINANCIAL BREAKDOWN:

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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Unfortunately, since we’ve been home from Nationwide hospital, Jameson hasn’t made the progress we were hoping for on the bowel management regimen. We will be headed back to Ohio in August for testing of his colon, a botox shot to help him empty more efficiently and to get the Malone placed. We will be there for roughly 2 weeks.

Earlier this week we had an appointment for Vaeda at the GI doctor since she is following in her brothers footsteps. She will be getting imaging of her bowels this coming week. We are praying we aren’t headed down the same road with her as we are with Jameson. But hopefully we can finally get a diagnosis for Jamers that will help us with her!

Please pray for our sweet children and share this for us ❤️
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Tuesday we leave for our 20 day trip. I wish I could say I’m processing everything Jameson is going through but I’m just not. I sort of feel like I am numb to everything at this point. I can’t imagine my sweet boy needing this surgery. I can’t imagine having to use a catheter to access his Malone every night just so he can move his bowels. What if it doesn’t work? What if we do something wrong? What other options does he have? So many questions. Not many answers.

I just keep thinking of sending Jameson to school full time in September. No mother wants to send their child off to school for the first time. But I can tell you it's especially difficult when your child has medical issues and emotional issues on top of everything. I just want to
keep him in his own little bubble, protect him from every single problem he will ever face in this world and keep him home with me forever. So I'm so desperate for him to at least have control over his bowels come September. Maybe that will make the transition easier for both of us.

On top of everything going on with Jameson, our daughter Vaeda has been having similar issues for about a year now, with the most severe issues within the last 6 months. She had her first X-ray this weekend and she is severely constipated. She will most likely also need to be seen at nationwide as soon as we get a referral and the go ahead from her insurance company.

Please keep sharing and donate if you feel it in your heart. We would appreciate it so much!
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We received Jameson’s biopsy results which were INCONCLUSIVE. Devastating. This means the sample of tissue that was taken had no ganglion cells (cells needed to have a bowel movement) but bc the sample size was not sufficient they were unable to make a diagnosis. Yup... unbelievable.

Jameson’s new laxative and fiber regimen has proved to be unsuccessful. And even with the botox he is not having a bowel movement now. I really tried to be positive and hopeful but in the back of my mind I just knew this was not going to work.

Sometimes I think people aren't able to grasp the seriousness of Jameson’s issues. I've had a lot of well meaning people ask me if we've tried certain things for constipation like prune juice or having him drink more water. What people are failing to understand is this is NOT constipation. He is literally unable to have a bowel movement unless it is running right out of him from being turned to complete liquid by SO MUCH miralax. Imagine needing to move your bowels but you literally CANNOT. We would be in a panic bc we've always been able to. To Jameson, it's just another day. “Mom, I'm pushing but it's not working." "Mom, I don't have poop in my pull up so I must not have to go." "Mom, my belly hurts but I can't go." I hear these things around the clock every single day.

It is beyond frustrating to know we are back at square one. Most likely headed back to daily miralax just so stool can leak out of him but at least prevent an obstruction. The fact he has to go through bowel management which will throw harsher doses of laxatives at him in order to hope for a bowel movement on his own, disgusts me. I'm not trying to be a Debbie downer but I am going to say there isn't even a little bit of me that believes that program will work for him.

There is always the enema version of the bowel management program but I am not doing that to him. I cannot. I need my son to have a sense of security and safety with us as parents and constantly having someone give him an enema is not how to achieve that. That is why we would opt for the Malone when it gets to that point.

Please keep sharing and donating if possible. Thank you.
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We had our appointment at Nationwide last week. For the most part the tests confirmed what we already knew. We are waiting on the biopsy results that will tell us whether or not Jameson has Hirschsprung’s disease. Knowing that information will definitely help the game plan.

Jameson’s colon is very large. Dr Levitt called it “impressive” bc of it’s size. He’s currently on a new laxative regimen that no longer involves miralax! Praise the Lord for that.

We will be heading back in April for the bowel management program. However, if his colon is not responding to the laxatives (there is a very good chance that he will NOT) he will need daily enemas to clean his colon out. Since he is older and all too aware of what’s going on, he absolutely does not want an enema. It is nearly impossible for us to give him them. So luckily there’s a solution to that called the “Malone.” This is an operation that connects the appendix to the belly button and enemas would be given through the belly button nightly. The goal is to get his colon to shrink back down to normal size and also keep him clean between bowel movements.

None of this is ideal and I wish to God I could take Jameson's struggles upon myself. We are hoping to get him to a place where he can feel confident and comfortable going to kindergarten in the fall. But we will cross that bridge when we get there. I have no problem keeping him home with me for another year until he gains controls of his bowels.

Please keep sharing our page as there will be more trips to Nationwide and financially it is tough. We have been blessed with the donations we've received thus far and they have helped tremendously with everything from travel expenses to eating wherever is convenient without having to worry about funds. I can't tell you how awesome it is to know you can stop off at an exit and feed your family without having to worry how you are going to afford everything. This past year and a half has been very difficult for our family financially and the last almost 5 years have been so emotionally trying so we thank you from the bottom of our hearts ❤️❤️❤️
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$5,050 of $6,200 goal

Raised by 42 people in 11 months
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