Changes are happening!

After realizing it has been over seven months since my last post I decided it was time to post and make some changes, the biggest change being the need to update more often!  My goal is to update at least weekly so our friends and family who are afar can know what is going on with James.  With that being said, I have a lot to update on so bear with me as I begin to write.

Back in September, I took James in to his primary pediatrician because his stomach was extremely distended.  At that time lab work was ordered to see if James was suffering from a food allergies and an x-ray of of his stomach was also done.  His lab work came back normal; however the x-ray did not:  the results showed his colon was extremely full of stool, causing his large intestine to push on his diaphragm.  Our weekend plans were quickly canceled and we headed to the hospital and planned a weekend of a clean out for James.  He had an NG tube in his nose and received approximately 10L of Golytely to help his body pass his stool.  It was a long weekend for all of us but we were able to go home after two days, when an x-ray showed that he no longer was full of stool.  

September 13, 2014

After our discharge from the hospital we began seeing a pediatric gastroenterologist to assist us with coming up with a regiment to help keep James regular.  Unfortunately, his stomach began to become more and more distended and quickly returned to the size it had been prior to his hospitalization.  He was passing stool regularly and we were unsure what the cause of his distension was.  On March 11, 2015 James had a contrast study done which would allow physicians to see his colon.  After the pediatric radiologist looked at his x-ray we were sent to meet with the pediatric surgeon because things didn't look quite right.  

The surgeon we met with, Dr. Downing, told us that he was 99% sure James had Hirschsprung's Disease based on the contrast study and previous history.  He explained to my husband and I that typically children are diagnosed with Hirschsprung's once they start eating solids and it was uncommon for a toddler to receive a diagnosis such as this.  Dr. Downing advised us to consider a colostomy for James to give his colon time to rest and return to normal size and that James would have another surgery in approximately six weeks to take down the colostomy.  We scheduled the surgery and went home to talk about things and weigh the pros and cons as a family...ultimately we knew we had no choice but to go ahead with the colostomy creation for James.  

On March 17th, 2015 James had his surgery in which his colostomy was created and a biopsy of his colon obtained.  Dr. Downing received the pathology results the day after James' procedure and the results were not what we had expected...the results of James' biopsy came back negative for Hirschsprung's Disease.  We were disappointed to hear this because with Hirschsprung's things could be easily managed...now we were left with a series of questions, including what is going on with our son causing him to have such an enlarged colon.  Dr. Downing educated us on megacolon  and the seriousness of the diagnosis.  Hearing that your child has a life threatening condition in which the cause/reason is unknown is the worst feeling anyone can endure.  I felt like someone had punched me in the stomach and wondered how I would tell my husband, who was still at work.  Thankfully, Dr. Downing stayed late to be able to share the results of the biopsy with my husband.  Dr. Downing prepared us that we have a long road ahead of us to determine the cause of why James has such an enlarged colon.  

Up to play and eat a snack.

Our hospital stay ended up being much longer than anticipated.  We were told to expect to be in the hospital overnight and James would bounce back quickly, however; that proved not to be the case.  After six long nights in the hospital we were able to come home on  March 23rd, 2015.  We were lucky to have my mom spend time at the hospital with us and were blessed with visits from close friends, meals, phone calls and numerous text messages checking on us to see how were were doing.  Fluctuating temperatures kept us much longer than anticipated; while the exact cause of the fevers remains unknown, it is suspected it was due to some of James' colon dying (which the surgeon anticipated).  

Calling Dr. Downing and telling him that he is ready to be discharged.  

We are adjusting to life with a colostomy.  James is handling it much better than we had anticipated; rarely touching it or playing with it.  It took some getting used to for him; as he didn't like when the plastic bag touched his skin when he walked but with the help of some big boy boxer briefs he is adjusting.  James has lost five inches around his stomach which is incredible for a little guy his size.  His distension is gone and for the first time in years he has a flat stomach.  At this point we do not have an exact date when his colostomy can come down, we know that we are looking at 3-6 months verses the initial 6 weeks.  While it's disappointing, we know that in the big picture 3-6 months is a short amount of time.  Our little boy is finally getting his spunk back and that is the best part about this; we missed his personality and are so happy to see it shine through again.  Without the support of our friends and family; this would have been much more difficult than it already has been to deal with.  Please feel free to ask questions, we are learning a lot about things we never knew about before and are happy to answer any questions people may have.