Dylan Chase-a courageous Hirschsprung's Disease story

christmas2

2010-11-22T19:55:00.001-08:00

Chocolate Lime Snowflakes American Lung Association Holiday 5x7 folded card

Get custom holiday cards online at Shutterfly.com.

View the entire collection of cards.

This ugly thing called Hirschsprungs....its sneaky....

2010-10-22T07:52:00.000-07:00

I may not be a doctor, a surgeon, a nurse, or even a scientist...but it doesn't take a genuis to figure some things out. This thing called Hirschsprung's, well it is difficult, a real scary thing at first. Any parent with an HD child knows the first year of Hirschsprungs is the hardest, gradually things get better, then there are back sets as well. With everything Dylan has been through the toughest by far is the surgeries of course, irrigations (who would like those?), and there is bowel obstructions/enterocolitis symptoms. Dylan has done so well since early spring. He has had 1 tummy bug since then (and since preschool started)....But today the ugly Hirschsprungs has showed itself again....Dylan became sick the other day, not "gut" related sick, just sick--like a cold virus/allergies...coughing, sneezing, runny nose and a bit of a fever...As if that weren't enough for him to have to deal with, I woke up this morning to a "mud puddle" on the sofa, any Hirschsprung parent will probably know what I mean by that...My little guy standing beside of the sofa crying his little heart out because he was soaked with watery poo. As I said, this HD thing can be ugly....So here we are today with a nasty cold, and smelly, watery diareaha...Thank you Hirschsprungs for testing my strength. Things are getting better slowly today and Dylan is finally starting to drink a little bit of fluids, and as usual since not eating much for the last few days my little guy looks so skinny....The moral to the story you ask? Hirschsprungs never completely goes away, just when you think things are looking up, it sneaks back in with either a tummy bug or a cold virus....But you know what, we will get through it time and time again, and forget about it a little while longer before it happens yet again....But I can say we are blessed compared to some. Never lose hope, to all those out there trying to keep your HD children healthy, there will always be times when HD seems to get the best of you, or seems to always cause problems, but just remember stay positive things are always going to get better and they will hopefully never be as bad as the previous years....Never give up and know tomorrow is another day, and possibly a healthy HD symptom free one!

Yet another journey begins....

2010-09-05T13:06:00.000-07:00

Dylan has accomplished alot of goals this year, the most important being toilet training and preschool. He started school at the beginning of August and he loves it and looks forward to going every morning. This was a big deal for me because I thought it would be so hard, that he wouldn't like it, he would cry...but I was stunned to see the exact opposite.

In early blog posts I have mentioned Dylan changing after surgery, changing meaning his demeanor, his attitude, his emotions, his development---just everything in general. Looking back I have realized that I have always known there was an issue there...The older he gets the more noticeable it has gotten, first I thought it was something he would "grow" out of, but then I saw him regress instead of progress...things have slowed down, and at age 4 I can see a big difference between him and other kids his age, I can even see a big difference in him and his younger brother. Dylan showed signs of "sensory issues" as early as age 2, but at that age its really hard to tell if there is something there worth worrying about...especially when he was battling such a rare bowel disorder like Hirschsprungs that was causing him to be sick and fight for his life.....

Now with confirmation from a developmental specialist, one of my fears has been "brought to life"...Dylan was diagnosed as having "Autism Spectrum Disorder". There are alot of sequence of events thats taken place, gave us suspicions and gave us clues, so we made the decision to have him see a developmental/behavior specialist last week. Now with a diagnosis its time to look into options for therapy, things for me to do at home with him, and just daily teaching stuff to help him succeed in life and bring out the intelligence that we know is in his brain but that he has such a hard time getting out....With great therapies and a daily structured routine Dylan will live a normal life, its up to us to give him that though....Its sad to see him have such a rough time, but it helps me know that my gut was right all along, and now just maybe I can get him some professional help instead of second guessing myself as far as coming up with ideas....This is going to be a difficult journey, but we have made it through hirschsprungs so I feel like we can make it through anything....But now at least the health and medical issues are out of the way so we can concentrate on the Autism and how to help our special boy.

As they say, God never gives you any more than you can handle, so we will look at this as another learning experience and do whatever we can to help Dylan succeed in life...It may not be easy, but no goal worth reaching is...everything in life takes hard work and dedication but in the end, it will all be worth it....

So Far, So good...Potty Training is finished.

2010-06-15T11:26:00.000-07:00

I am more than happy to report that potty training is officially over for Dylan. He has done rather well since his 4th birthday and things continue to be fine. We are still giving him a daily fiber supplement, and have decreased the laxative to a "need to" basis. His last episode of being backed up and sick was in April and I can honestly say that I have felt so relieved that he hasn't had anymore of these episodes. What seems to help him, is the laxative. If he goes a day with slower bowel activity such as only going once a day or just a little bit at a time that is usually a sign that he can use a laxative to help get things moving and back to normal. Usually this does the trick, giving him the laxative daily was causing him to go constantly and have diareaha which as you know can be difficult to control while potty training.

We finally got to see how Dylan would do away from home being toilet trained. We had a family get away for a weekend and went camping...I had no idea how Dylan would do, each camp ground had a bathroom between camp sites and I was afraid he wouldn't make it in time and would have accidents. Luckily though, things went well and he didn't have any accidents. It just took him forever to go, I guess it was a different bathroom and a public like place and wasn't home so it took him a while to get use to using a different toilet (after a can of lysol and tons of lysol wipes I might add). Over all it was a good experience and showed me that Dylan will do well in different environments as far as using toilets when away from home..This brings us up to date with our Hirschsprungs Journey...things seem to be ok and hopefully will continue this way. Next step is preschool in August. I look forward to blogging more then about our experience with HD and preschool....

Hirschsprung's Disease Awareness and Fundraisers

2010-05-06T20:12:00.001-07:00

Ok Hirschsprungs parents....I was ready to make a closing post and call it quits with blogging since Dylan has done soo well with potty training and it feels that our Hirschsprungs Journey has finally come to an end. But this has been a big part of our lives for 4 years now, we have battled, cried, and grieved through this long process until finally we have a reason to smile, laugh, rejoice and be happy. I am more than thankful that our journey has finally took a drastic turn for the better, but I can't forget about those children who are still struggling and still traveling the path we once traveled...With that being said I would like to come up with some ways to raise awareness for Hirschsprung's Disease but also fundraise for a good cause such as Cincinnati Children's Colorectal Center. If you have any thoughts or suggestions please feel free to comment below. Our Hirschsprung's journey may be over but I would love to be able to give back and also raise awareness.

We have accomplished our biggest Hirschsprung's Milestone!

2010-04-18T08:17:00.000-07:00

I officially have a potty trained 4 year old little boy....I must confess I could not be any prouder!!!! Dylan has done really well with the laxative and fiber supplement, this is helping him go twice a day. He has done so well, and seems to be so proud of himself too. He likes his big boy underwear!!! Dylan has been potty training for 11 days, although we had that one episode of a blockage when we first started once we go that cleared, things became more regular thanks to the laxative and fiber supplement. He had a few accidents in the beginning but after the 3 or 4 day mark he did quite well. Our only problem is that Dylan seems to "hold" it...I find him crossing his legs and basically have to drag him to the toilet at times. But he is doing excellent and I honestly didn't expect things to go as good as they have. I am so very thankful!!!!!!!

He seems to be so proud of himself every time he gets on the toilet to go, when hes finished he has the biggest smile and of course he likes to see MOMMY be proud of him and tell him what a good job he's done ....I am truly blessed!!!! Hopefully this is the light at the end of the tunnel with our Hirschsprung's Disease journey, although I know things will creep up later, and he will probably still have minor issues with his intestines, but over all I think he has conquered his Hirschsprungs Disease battle and has showed it, HE IS THE BOSS....Prayers to all of you who are still struggling with HD and potty training. And to those who haven't started potty training, please use Dylan's story for inspiration and hope and know that nothing is impossible and things do get better. Dylan has had a rough 4 years, but to see him come this far and accomplish potty training has been so worth the wait. My heart is filled with compassion for all of you going down this same road...May God bless you and help you on your Hirschsprung Journey...

"Fiber Choice" The perfect fiber supplement that kids will actually eat!

2010-04-13T17:05:00.000-07:00

I haven't researched this product, so I am not sure if many physicians recommend this or not but Dylan seems to love it and it he could sure use more fiber in his diet. Since trying potty training lately, I thought more fiber in the diet would help bulk up the stool or loosen it if needed. Fiber usually helps regulate the bowels. This fiber supplement is a tablet and is made in fruity flavors which makes it easy for kids to actually take without having to put up a fight like other bad tasting medicine or supplements.

This is offered at most drug stores and probably available at Wal-Mart as well. I found a small traveling tube size like they make the glucose tablets, for $2.25 at our local Dollar General Store. The big containers are $14.99 which is a reasonable price for a bigger amount. Just wanted to share this information in case anyone else is trying to get more fiber into their kids diet.

Laxatives and Fiber is the key to our Potty Training Success

2010-04-13T16:24:00.000-07:00

Dylan has done pretty well with understanding the concept of toilet training. During the first day of potty training he did poop in the potty a few times but started showing serious signs of constipation and possibly an impaction or obstruction so we quit for a day and had to return to the dreadful (but life saving) rectal irrigations. Once returning to potty training I emailed a nurse at Cincinnati Children's Colorectal Center, and she said to start a daily laxative to prevent constipation instead of just using a laxative to treat it when it occurs. So we are back to 1 chocolate Exlax and I have added a fiber supplement as well. Today has been the perfect day with no accidents and I am so proud to have been able to be patient and let Dylan work this out on his own. He's still got a ways to go before "mastering" it, but he is getting there and I couldn't ask for more. I am pleased to have come this far with the rough road Dylan has had. Seeing Dylan use the toilet like a big boy has been such a blessing, yeah how many parents are you going to hear say that? lol, but I know its a big accomplishment and milestone for him and I am so very proud of him, my heart melts after I praise him and he just has the biggest smile on his face like he has done the best thing ever..It just can;t get any better than that.. I pray that things continue to go well. Dylan is already enrolled in preschool for next year which begins in August, so we are making good progress and are hoping things will get better and better and that preschool will be a breeze. Stay tuned for more exciting potty adventures!!!!

A birthday is a blessing in so many ways

2010-03-30T11:06:00.001-07:00

This past Saturday, March 27th was Dylan's 4th birthday! I cannot help but to feel so blessed this time every year. When he was born there was that small doubt that he would ever celebrate a birthday at all when he was in critical condition. Now, 4 years later, I can only express the way I feel by saying that we are blessed and think back every year about what he has overcome and are truly thankful that God has let us keep our little guy who has truly beat the odds. All parents know that their child's birthday is special, but when you have a child with a medical disorder who has pulled through so many difficult times, it really puts in perspective how blessing a birthday can be.

A little success brings alot of HOPE!

2010-03-14T07:11:00.000-07:00

Dylan's fourth birthday is coming up in a few weeks. Everyone knows that I have taken this potty training thing slowly, not forcing him to do it afraid that forcing him would just scare him away from it all. Well, FINALLY, a little success.

Dylan spent an hour or so at my mother in laws a week or so ago, so I could run some errands. She said that he went to the bathroom, climbed up on the toilet, and peed on his own. I will admit at first I was a little skeptical, like "uh yeah right"...Just because this has been such an issue for Dylan. He always would SIT there but never wanted to do the real thing.

Ok, back to the topic, Dylan is in this "streaking" phase. He will not wear clothes and also always wants to take his diaper off. So last night I used it to my advantage, and kept insisting that he try to use the potty. Dylan has now finally realized that he can make himself pass gas, ok a little gross I know, but us HD parents are unaffected by gross. So while he was sitting on the potty I explained to him, "Try to fart, remember how you do when Mom diapers you, push and try to fart"...and he did....and guess what happened...He did his first poop in the potty. I know, I know, seems modest to brag about a little poop. But as parents of children with Hirschsprungs Disease I think we can all agree that everything about our lives so far has been about poop. So yes, we can brag about poo in the potty!!!!!!

This has been a long time coming for us, Dylan is almost 4. Now, I have no idea if things will keep going this easily. I don't exactly know if he is ready for potty training at a more serious aspect. But we will try, and that is all we can do. At least now my worries are put to rest because I know he can do this, I know he has the ability to control it a little. My plan of taking things slow and just letting him try when he is ready has worked. Not an absolute success yet, but this little bit of success shows there is hope and I am excited to see where this takes us.

I hope this gives other hirschsprungs parents hope, and if it shows you anything it should show you just to have patience and things will happen on their own. Encourage your child to use the potty but don't push it...It all happens when they are ready. And for us we are finally on the right path and are ready to tackle this potty training full force now....I know it won't happen over night, and it isn't going to be simple...But we are ready to give it a "real" shot and let Dylan conquer it as he feels ready. Good luck to the rest of you that may be on the potty training path. A little success can bring alot of hope, it has for us.

Laxatives, Irrigations, and Probiotics --Oh my

2010-01-30T07:56:00.001-08:00

Anyone that knows anything about Hirschsprungs Disease can tell you the facts. The first fact is that every child with this disorder requires an operation to remove the part of the colon that does not work properly, leaving the child with a shorter than normal colon. Since Dylan has had 3 operations, the first 2 operations in the first year of his life, his colon is rather short. He approximately has a third of his colon left. This causes him to have diareaha like bowel movements because the large intestine is responsible for absorbing the water and turning stool into a solid form. As of lately his bowel movements have slowed down. My last post was about a possible partial obstruction caused by his slower than normal motility and my mistake of giving him popcorn.

After trying an irrigation and Dylan vomitting once, he began to feel a bit better, but his bowel movements still were not normal. He wasnt passing enough on his own to fully empty which causes him to get sick and backed up. I contacted the nurse that handles Dylan's case at Cincinnati, filled her in on what was going on, and asked for her opinion of trying a laxative. With the confirmation that it would be safe, we tried exlax. We were told to try 1 square, if he didnt empty on his own within 24 hours to try an irrigation and then up the dose to 2 squares. Dylan is one of those children who goes into fits at just the sight of a medicine bottle, so luckily I hid the package that the exlax came in, and handed him a chocolate square. Much to my surprise he gobbled it down and wanted more!!!!!!!.....The exlax did work, slowly he began emptying a bit at a time, 24 hours later though, he still wasnt emptying like he should, so I did another irrigation. During this time he lost 2 pounds, which shows that his colon was with holding alot of stool. The exlax caused him to have a nasty rash on his bottom that bled, so we have since stopped giving him that.

But I am now doing irrigation ever few days, just to help his colon empty. We have also tried some probiotics. Probiotics will help put some "healthy" bacteria in the colon. So yet again we are back to trial and error trying to figure out this puzzle....Will we ever figure it out? Will Dylan ever be well enough to just be able to live a normal life without irrigations, or medicines? I guess that all depends on the results of the trial and error methods we try. Until then, we have hit the "motility" road block and are not sure what to do.

Popcorn is officially a "No, No" in our house

2010-01-25T03:14:00.001-08:00

So recently Dylan has gained some weight, looking healthy, and I actually thought that just maybe his Hirschsprungs Journey was getting a bit easier, or "outgrowing" the major issues, as some HD kids do. Little did I know that most likely instead of healthy weight gain, we were looking at a bloated belly due to slower motility, meaning his bowel movements were slowing down. Dylan has always been a picky eater, does not try too many new foods, and sticks to stuff that he knows he likes. Hes never been a "healthy" eater, and I've never forced him to any one certain type of diet. There are some foods that affect him different ways, some give him diarreaha, for example if he has too much sugar in his diet. BUT, on the other hand, we are now realizing there are certain foods that he cannot have. The one thing Dylan use to absolutely love was popcorn. Believe it or not popcorn is officially a "No, No" in our house now because it causes Dyaln to completely block up. I had once suspected this a while back, but was told by a doctor that popcorn is good for kids, and a great source of fiber, and fiber is suppose to help "bulk" the stool. However, this is not the case for Dylan. He had popcorn Friday evening, starting Saturday his motility started to change, barely having a bowel movement, feeling like he needed to go but couldn't. If he did go, there wasnt much. So by Sunday, he was blocked up quite a bit, didnt eat much for breakfast (and thats some of his favorite types of foods) so I knew it was possible he wasnt feeling well. Him and I went to the store, he loves to shop, but he was very quiet on the trip there and back, when we got home he went to the couch and begin to lay around which was when I knew what was coming next. He slept a few hours, and he usually rarely naps...Sure enough his temperature went up a bit and I debated on whether to start rectal irrigations in hopes of getting ahead of the problem before it started or got worse. The irrigation wasnt an absolute success but it did help a little. Dylan did start feeling better and wanted to get up and try to play, but as soon as he did he vomitted a few times, and then was back on the couch for the rest of the evening. He did wake up fine though, and seems to be doing well, is eating again, and is having some bowel movements. So looks as things are "moving along" now and hopefully returning to normal. This goes to show that these kids are more than likely going to have issues for the rest of their lives. Probably not serious issues, and things will most likely get better as they get older, but as every other HD mother has said..."its all trial and error"...When you find foods that affect their motility in a negative way, then you make a "NO, NO" list and know they cant have it...And for Dylan this list now includes popcorn, which was always one of this favorite snacks. But another important note is to know the signs and symptoms of knowing when a blockage or obstruction is forming and get a step ahead of the problem before it gets too bad. This time I knew to react quickly and it only lasted a day, the last time he did this it lasted a week and he ended up in the hospital. Thankfully this was a short episode, which can be prevented from now on from just avoiding popcorn. So my lesson this week is, Short colon + slower motility + popcorn = a "No, No". This may not be the case for all HD kids, I have had some HD moms tell me that popcorn has no affect on their kids, but other foods do, so it is different with each child, and of course each childs HD case is never the same, noones colon is exactly the same, things affect people in different ways. The moral to the story is monitor foods and their affect on motility. I know I have learned some valuable lessons from doing so lately.

Night Time Tummy Troubles

2010-01-15T11:05:00.000-08:00

I know I have said time and time again, that I am blessed that Dylan is well and healthy, things could always be worse (and thank god they arent). But I must know, when will these kids every get a break? Im sure the other Hirschsprungs families can relate to that question.

Dylan woke up at 3 am this morning, his stomach rumbling, crying that he needed a diaper, his words were "I poopied Mommy, change my diaper"....But there was nothing there. He continued this for an hour, I kept trying to massage his belly, put his body in positions that would help relieve gas if that was the problem, while I rubbed his back. Nothing seemed to help. It really breaks a mothers heart for her child to be complaining of pain and discomfort, and yet theres nothing she can do to help. Hugs and love is all a mom can do at times like this....My poor little guy finally went back to sleep, and woke up this morning fine. So it is a good possibility that it could have been gas (air) build up that was causing him such pain. He hasnt had any bowel movements today, and after last night that makes me wonder if an obstruction is starting but you know what....I worry too to much......So hopefully its nothing and today things will return to normal. On days like this is does help to keep a positive attitude and be optimistic. If not the worries and struggling would drive you crazy other wise.

Jan 2010 ~1 year anniversary of Dylan's second Pull-thru surgery

2010-01-12T05:21:00.000-08:00

Christmas is over, the new year has begun. January 6, 2010 marked a special time for us.....a new year, and Dylan's official 1 year post operative anniversary. Though its been one long road, and the battle is clearly not over, last year was a blessed year. Dylan has been doing ok, hasnt been sick that often like he had been at one time. We have attempted potty training, or well I should say I have, but Dylan is just stubborn and really doesnt even want to try. As of now, hes still in diapers, well if you count the 1 hour of a day that he will keep one on anyways. Hes in that stage to where he is always wanting to pull his diaper off, and when he does this I take him straight to the potty and tell him if he doesnt want to wear a diaper that he needs to try to use the toilet. Of course, when I take him there and make him sit there against his own will, he gets mad and doesnt like it. The only thing is, if I leave it up to him to do it, he wants to sit there with his diaper or underwear on. So we are having absolutely no luck with toilet training. I knew it would be a difficult task, but its turned out harder than I amagined just because Dylan does not want to do it. I still plan on using this oppurtunity to my advatage though, if hes going to take his diaper off a dozen times a day, then hes going to sit on the potty each time. With this hopefully he will begin to realize what he needs to do if he doesnt want to wear a diaper.

Dylan's hirschsprungs journey has never been easy, although we are lucky it has went as well as it has. Theres so many kids out there that struggle alot worse, so I am more than thankful that God has let us have "the easy road" compared to some. I cant complain, we will just work at it until we get it. Dylans 4th birthday is coming up, and I cannot believe how time flies. My little boy is turning into a big boy and will soon start preschool which will be a whole new chapter, and hopefully we can get him potty trained by then, and if not then, well we will pray that he ends up with an understanding teacher that has a big heart. So, to the rest of you Hirschsprungs mommies out there...stay strong, and take it one day at a time...Things will slowly look up, when things seem hard, just remember, things could be worse, we still have our precious children after all, some havent been so blessed. So always count your blessings...the few, the better, just be thankful.

Tackling the potty- One step at a time

2009-12-15T22:47:00.001-08:00

It's no secret that Ive been concerned about Dylan's potty training ability. Along with this rare disorder causing tons of enterocolitis episodes it also affects kids daily even as they get to be bigger toddlers and grow into big kids. Like Dylan, alot of kids have issues with loose stool. This becomes a problem when potty training because the bowels are over active and loose, which is hard to control.

I haven't been in a hurry to toilet train Dylan just because he's had such a rough time with everything else and has some anxiety issues when you try to force him to do anything. We started introducing the idea of using the potty a few months ago and Dylan would scream at the sight of the toilet, he wanted nothing to do with it, and he sure didn't want to sit on it.

Well recently Dylan has started to make a routine in the bathroom, he now thinks its funny to go sit on the toilet and make farting noises. Its rather cute, and I must say I cracked up the first time I saw him do this. Although he does want to leave his diaper on, at least he's showing that he does have a little interest and does know what to do.

As of right now, Im taking this step in really introducing and trying the potty training but approaching it with little expectations so I can give him time to really succeed at it when he's ready. Dylan has started taking his own diapers off when he is just running around, so Im using these moments to run him to the bathroom and sit him on the toilet while he is indeed diaperless. I also introduced big boy underwear, my only problem with that is, whether its diapers or underwear Dylan doesn't want to pull them down before sitting on the potty. So it's going to take some more time, but we are slowly turning the corner, and of course we are taking things as they come one day at a time. Slow and steady wins the race, and we will cross that finish line when Dylan is ready.

Dylan's Youtube Video to raise awareness of Hirschsprung's Disease

2009-10-20T11:33:00.000-07:00

This video was made in hopes to raise awareness of Hirschsprung's Disease. Truly shows the ups and downs of what these kids go through battling a rare intestinal disorder....

Recovering and Restarting

2009-10-14T00:29:00.000-07:00

My last post was about Dylan being sick again. After being sick with watery diareaha and vomitting for 6 days and not eating and barely drinking and not getting any help from pediatricians at home we decided to make the trip to Cincinnati to see Dr. Levitt. He had told me in an email to do rectal irrigations 3x a day, but Dylan just kept getting worse so of course I was scared and wanted Dr. Levitt to see him. Dylan was feeling a little bit better when we got there, we saw Dr. Levitt and he diagnosed enterocolitis (an inflamation of the intestines)admitted him so the nurses could continue the irrigations and the plan was to do IV fluids and antibiotics. Things worked out fine and we even lucked in to avoiding the iv. We came home and Dylan did a complete turn around....

This goes to show you that with Hirschsprungs children, a surgery isnt the absolute fix, children still go on to suffer and always will have a life time risk of getting enterocolits which can be dangerous if left untreated. We have always taken our journey with Hirschsprungs one day at a time, thats all you can do. It is a struggle that you just pray doesnt keep getting worse and hopefully gets better and pray to see that light at the end of the tunnel.

Irrigations AGAIN?

2009-09-29T05:35:00.000-07:00

With Dylan's recent episode of bad bacteria overgrowth, I contacted Dr. Levitt who has advised us to start irrigations again. And anytime he takes these episodes. Dylan only has 10 inches of his large intestine left, so its obvious now that these episodes are kind of like entercolitis episodes where the bad bacteria grows and takes over the good natural bacteria thats in the colon. The irrigations will help wash the colon out, which will help the bad bacteria move on out. We have to start these today 3 times a day, then taper off to 2 times a day, and then once a day fromt hen on out. We have to go back to see Dr. Levitt soon and Im going to discuss this more with him then. Its difficult to do these, and Dylan doesnt like it at all, but if it benefits him and helps him get healthy again and stay healthy I will do what I have to do and hope everything works out for the best.

Dylan has been sick since Sunday, he wouldnt eat or drink anything Sunday. Was throwing up a few times, and then as usual he had the foul smelling watery diareaha. Yesterday I made the choie to take him to the pediatrician just to have him checked out. We have been through 2 pediatricians already. The first one we changed because they told me Dylans blood work was fine and i later found out that it was abnormal and he showed signs of infection in his blood so I took him to his surgeon and he was hospitalized immediately. The one that he sees now, is SUPPOSE to be a gastroenteroligist, and specializes in the digestive system. He has never been a help to us, and yesterday i really didnt expect any different but wanted to take Dylan to be checked out. Instead we ended up seeing his wife who is a dr as well, and she did nothing but make me feel like a horrible parent and that i wasnt doing my job to help Dylan stay healty. She stopped short of nothing but calling me a bad mother, Dylan has always had anxiety issues with dr offices and hospitals. Thats to be expected with everything he went through last year. She looked over the current symptoms Dylan was having and then explained to me what i already knew which was that the bad bacteria was over taking the good bacteria in his intestines. Then she abandoned the situation, flipped through Dylans chart, and says "He has anxiety and ODD that you are not getting him treatment for?" "WHAT" is all I could think of. I guess he didnt like the fact that she couldnt talk over Dylans crying so loud so she decided I was a bad parent because he cries when he comes in to a dr office. So after the "not getting him treatment" remark I say "they offer therapy for 3 year olds that have dr office and hospital anxiety?" then she realized she opened her mouth before she really knew what the issues were. She said that no they dont but if affect his every day life and hes scared of everything and cant sleep then yes he would need some type of treatment. I then explained to her that he only does this when he comes in to a dr office or hospital and that he is just traumatized because every time he goes to a dr or hospital a dr is putting something in his bottom, and could she not see why he would be fearful. I think then she got the point but then she went on to putting me down for not bringing him in for physicals and well check ups, not looking at the fact that we are there every few months because hes sick and we leave there empty handed with no prescriptions or no help. SO needless to say I am soooooo done with these doctors and I will be finding another pediatrician this week. One that can understand what my child has been through and have compassion and understand that hes been through alot and he is going to cry when he comes into a dr office because he is scared. I have said many times that I wish surgeons could be your childs pediatrician too, they show so much more concern and sympathy and understanding toward a child. Its sad to see that the medical professionals that choose pediatric medicine for their career really do not care about the child or helping. The only thing a pediatrician is really concerned with is well check ups, the dont worry about anything that they are not specialized in treating. Its really disappointing that I have lost faith in pediatricians in general...they have let Dylan down too many times, the only one I turn to now is his surgeon, who I have realized is the only one that has truly showed Dylan sympathy, compassion and understands what he has been through.

Today Dylan is still the same, not as much diareaha though but its becoming a battle to get him to drink which he really needs right now because he looks horribly weak and skinny. After a few days of this my boy looks heartbreaking and I would do anything to see him healthy and happy again....

Here we go again....

2009-09-27T20:55:00.000-07:00

As our appointment date to see Dr. Levitt begins to creep up on us, so does the dreadful stomach bug symptoms. Dylan's day started off normal, he woke up to watch some morning cartoons and had a cup of juice. He's not a big eater in the mornings, probably took that afer me. Him and I ran out to the store to grab a few things and back home. When we got home he played outside for a few minutes and then I asked him to come in, and he came in right behind me. That in itself let me know he was out of sorts, usually its a fight to get him back in the house when hes playing. He automatically went to the couch and just laid there. This continued for well over an hour. Changed the first diaper of the day and sure enough it was just a smear. He continued laying around, i offered him something to eat and something to drink but he didnt want it. He slept a few hours (which I knew for sure meant the throwin up and diarreaha couldnt be far behind)...and sure enough he woke up and was vomitting. He was also running a fever which is unusual, he usually never runs a fever when he takes these episodes. The nasty diarreaha started, and my heart breaks for him when he gets this because his little bottom gets in bad shape. His diarreaha is unlike any smell you could imagine, Its so obvious its full of bad bacteria just because it smells that bad...I just cant come to terms with why this keeps happening. God knows I am so thankful that we havent been through this in a while, and he has done well since June...but right as you think things are looking up it begins to prove you wrong. As a parent you worry what the future holds when your child has this type of issue, you wonder if its something more, something the drs are missing, and something that he needs more medical attention for. All I can do is pray it goes away fast and that he doesnt suffer long. Hes been so uncomfortable today and seems to have some pain and its so hard to watch your child suffer. With any luck I will have my happy, bouncy, energetic Dylan back by morning....God bless the rest of you out there that may be traveling this same road. I know its been a difficult one for us and pray that we see that light at the end of the tunnel soon and that things take a turn for the better....

Check up with Dr. Levitt is officially scheduled

2009-08-28T14:06:00.001-07:00

I havent posted any issues with Dylan lately, because he has done rather well. He hasnt been sick (thank God) and hes just having the regular every day problems with loose bowel movements. I hope everyone found the other information that I posted about Hirschsprungs and the bowel management program helpful. I always feel the need to share the information I learn just because I know if it helps us in some way then someone else could benefit from it too!

OK, so at our last clinic visit with Dr. Levitt, he wanted us to try the pectin, also immodium, and begin with potty training before he sees us again in October. I just emailed the nurse today to go ahead and schedule the appointment and this will be October 9th. We havent yet started potty training and I am a little aprehensive about it....Dylan doesnt really show any interest, and this child has been afraid of everything since going through all the medical issues and hospitalizations last year. He seems to get nervous when he sees certain things, kind of like he has a phobia of anything that reminds him of being in the hospital or even having irrigations or rectal exams done. The poor little guy doesnt like dr offices and screams at well check ups with his pediatrician fromt he time we walk through the door until we leave, he also doesnt even like McDonalds, Im guessing the glass doors remind him of going into a dr office so he puts up a fight when going in. I guess this could be a little bit of post tramatic stress.

So, we will be heading back to Cincinnati to see Dr. Levitt in exactly 6 weeks, so this will give me a little bit of time to introduce the potty training at a more serious attempt before we go back...wish us luck!

If all else fails-theres always The Bowel Management Program

2009-08-26T13:20:00.000-07:00

This is some information from Cincinnati Childrens Colorectal Center, they offer a bowel management program for children with fecal incontinence. Sometimes children suffer from fecal incontinence and need a little extra help, most of these children suffer from loose stool or diarreaha like bowel movements which are harder to control.

Toilet Training for Patients Previously Treated With a Bowel Management Program

Children with fecal incontinence, meaning they are unable to control their bowels, can be treated with a bowel management program that uses daily enemas to keep their colon quiet and clean 95% of the time. Anorectal malformations are defects of the anus, the opening at the end of digestive tract where stool exits the body, and the rectum, the final section of the large bowel leading to the anus.

When a patient reaches 3 years of age and is still incontinent and the parents are considering sending the child to school, we talk to the parents about the necessity of implementing a bowel management program to keep the child's bowel clean. This will allow the child to go to school with normal underwear and nobody at school that does not have to know should be aware of the child's problem.

Parents frequently ask the question, "Is this treatment for life?" The answer is, not necessarily. Some of those patients were born with anorectal malformations with a very bad prognosis or chance of gaining control of their bowels and most likely they will continue with the bowel management for many years. Other patients may have partial fecal incontinence, anatomical features such as well constructed sacrum (the lower part of the spine that forms part of the pelvis), and other factors that may indicate these patients could achieve bowel control in the future. For these individuals, bowel control trials should be conducted periodically.

Each year during summer vacations, when the child is not attending school, we can conduct a trial with laxatives. For this, we stop the enemas and see how much bowel control the child has. Within one or two weeks, the parents would be able to determine whether or not the patient is ready to continue without enemas.

Parents should learn about the specific type of malformation that their child was born with, since each defect has a different prognosis. This knowledge will enable parents to have realistic expectations about whether their child may achieve bowel control.

Basic Principles of Bowel Control Trial
A bowel control trial is carried out at home for a period of one or two weeks and must follow certain basic principles and procedures.

Talk to your child about the trial and make sure your child understands the trial's purpose and the general process.
Explain that during the trial, the child must avoid social gathering because of the risk of having unexpected embarrassing bowel movements.
Motivate your child to keep a clean colon. Establish some incentive, such as buying new underwear, and provide rewards for every day "clean day."
Stop the enemas.
Give three meals per day with no snacks. The purpose of this is to try to condition the colon to empty periodically at the same time. It is much easier to toilet train a child that has one, or even two or three bowel movements every day at predictable times, than a child that has very irregular bouts of diarrhea and constipation. Regularity is very important, but not always possible to achieve because of the difficulty in regulating colonic motility (the movement of food through the digestive tract).
Try to include the same type of food in every meal. The type of food largely depends on whether the child has been classified as belonging to the constipated group or the diarrhea group. Most patients with anorectal malformations suffer from constipation and therefore need a laxative type of food. Most parents know what type of food has a laxative effect in their children, but if you need help determining types of foods that are laxative or constipating, call the Colorectal Center at Cincinnati Children's Hospital Medical Center.
Make sure the child stays close to the bathroom.
Laxatives Are Often Needed
Because most of these children suffer from constipation, they commonly need some form of laxative to have bowel movements without enemas. The type and amount of laxative that a specific patient needs must be determined on an individual basis by trial and error. Most children with anorectal malformations do not respond to the usual recommended dosage of laxative. In determining how much laxative your child needs, try to remember if your child previously took laxatives and if so, how the child responded.

The laxative must be given once a day (not three times per day) in order to try, again, to provoke one or two bowel movements per day. Start by giving 1 teaspoon of a determined laxative at night. Keep in mind the effect can be expected the day after the laxative was administered. If the entire day goes by without the child having a bowel movement, that means that that not enough laxative was given and the amount should be doubled that night. It also means that the child needs an enema to remove the stool that has been there for 24 hours in order to avoid fecal impaction.

If the child does not have bowel movement the following day, the amount of laxative should be increased further and you should continue that way every day, while also giving enemas to avoid impaction. If the child suddenly develops diarrhea, that means that the amount of laxative given the day before was excessive and therefore should be reduced, but not eliminated completely. What we are describing here is a process of trial and error to try to find the right amount of laxative—the dose that provokes bowel movements but not diarrhea.

Most of the time we suggest parents also administer some form of fiber product in addition to the laxative. The fiber will provide bulk in the stool so the child can have formed stool rather than liquid stool. If the child's stools are too liquid, increase the amount of fiber and decrease the amount of laxative. Conversely, if the child has formed stool, but can't have bowel movements easily, increase the amount of laxative.

Sometimes the child is having bowel movements in the toilet, but the parents are not sure whether the bowels are being completely emptied. Under those circumstances, we recommend getting an X-ray film of the abdomen so we can see how well the child is emptying the colon. To promote complete emptying of the colon, the child is asked to sit on the toilet or potty three times per day, particularly after breakfast, lunch and dinner, or at another time the parents think the child is most likely to have a bowel movement. Sometimes suppositories can be used to provoke and help regulate the bowel movements.

Using Results To Determine Future Course of Action
With this trial and error approach, within a week or two, parents should be able to determine the type and amount of laxative their child needs, how much bowel control the child has, and whether or not the child is able to maintain a clean colon. If the test shows the child actually has bowel control, that means the child does not need any more enemas but must continue with the same bowel management program. If the test shows that the child has some bowel control, with occasional voluntary bowel movements, but still soils significantly, the child may need to go back to being treated with enemas. If the child is still soiling significantly, our recommendation is to go back to the bowel management for another year, and not to take unnecessary risks of embarrassing accidents at school.

Every summer, when the child is not attending school, the parents may try again. Every year, they will be dealing with an older patient, more interested in becoming fecally continent, and therefore, with more possibilities of success

Tips for thickening loose stools

2009-08-26T13:03:00.000-07:00

As everyone knows,Dylan has struggled with having loose stools. We are trying different things with the "trial and error" attitude. At this point we have nothing to lose, and hopefully will find something that works. So far we have tried things such as Benefiber and Pectin. Here is some tips that we have learned through doctors and hirschsprungs support groups. Hope someone finds this information helpful.

*High fiber diet
*Constipating Diet
*Probiotics (see link on the left)
*Pectin
*Benefiber

Dylans doctor has also recommended that we try immodium in hopes of slowing down his motility. We have not yet tried this. High fiber diets seem to have the opposite affect on Dylan as well, instead of thickening up the stool he gets worse diareaha. We have yet to try the probiotics but that is something I have been doing some research on, my concern is finding one that I can crush and mix with food or a drink. I did purchase a cheap brand at the local drug store and realized after I got home that the box said "do not crush". Benefiber is suppose to help regulate the bowels. Alot of people use this when they are irregular. Its most commonly used for constipation but was recommended to us because its suppose to regulate bowel movements, it is basically an extra source of fiber. We recently tried pectin, fruit pectin is used to make jar jams thicken up. There are flavored kinds with sugar added and flavorless with no sugar, but a fair warning this stuff is bitter which is why we had no success, and it also thickened up Dylans drink no sooner than i mixed it...it was the consistancy of pudding which of course would be hard to convince a child to drink. As we try more things I will report back with the results, as of now we are leaning more toward trying the probiotics because alot of parents with HD children or children with bowel problems in general use these and say it makes a world of difference.

Good luck to the rest of the parents out there sharing our same journey, it takes patience and understanding and a whole lot of failed experiments with different stuff, but sooner or later we will figure this out!

So Far~So good

2009-07-29T16:09:00.000-07:00

As of today, coming up on the ending of July and going on almost 2 months since Dylan's last episode of stomach bug symtpoms...just praying he continues to do well. Dylan is growing and getting so tall, and looking skinny. We have not tried the potty training as of yet, and really I dont want to push him cause he has no interest at all, and ever since this last surgery Dylan shows anxiety symptoms, he is scared of EVERYTHING.

We havent continued with the pectin, just for the simple fact that like Ive said before it was just so thick and bitter you could not mix it with anything and get him to take it. BUT, his bowel movements have slowed down, but still not thickening up. We are just gonna have to find some type of foods or vitamins to help with the bulking up. Dylan is suppose to go back to Cincinnati in October, and Im hoping to find some type of solution to his loose bowel movements before then. He still is dealing with nasty rashes depending on how much he goes a day, and consistancy. For you moms out there that have children struggling with this as well, the best types of creams that I have found for clearing up soars, (Dylans get so bad they look raw and bleed), is Sensi-care, elidell (px, used mostly for ezcema) and tha magic butt balm, which is a mixture of mylanta, some type of powder and desitin, our doctor wrote this out as a prescription that the pharmacy mixes up...and it has worked wonders when nothing else helped.

As for now, Dylan is doing awesome, growing, learning, and becoming a regular 3 year old. Ive started thinking about preschool but Im not really sure if I want to tackle that yet, afraid it would turn into a disaster that I dont want to deal with, hes so attached to his momma anyways.....

Hope all the other Hirschsprungs families out there are doing fabulous! Well wishes to you all and your special children!

I just don't get it

2009-06-08T14:44:00.000-07:00

Well for those of you who know me and my son, knows that Dylan is constantly sick with a stomach virus....The symptoms come and go sometimes as often as every few weeks. I know since Dylan has had 3 operations on his colon and does not have a normal size colon that he is more skeptical to catching stomach viruses....but sometimes your left wondering why so often and if theres another reason behind it all. Last year when Dylan would get sick he would throw up a few times and then just be sick for approximately 24 hours with diarreaha and wouldnt eat well. Now after another surgery, these episodes are beginning to last longer each time they occur. Its just a mystery to me, maybe something I will never fully understand...maybe this is just gonna be the way things are gonna be for him. I mean I know stomach bugs are something every kid has to deal with, but after seeing your kid be put to sleep probably 10 times and 3 of those times being a major surgery, you just hate to see them endure more pain, stress, and illness....its heartbreaking....

~Thanks for your comments~

2009-05-08T14:10:00.000-07:00

Just wanted to make a post to thank everyone who has stopped by to read our Hirschsprungs journey. My reason of making this blog is for one to make HD more known about, to raise awareness about this rare disorder and two to let other parents who have HD children know that they are not alone.

I appreciate all the comments, and am available by email to any of you who would want to contact me for information or questions. You can reach me at catrina_lynn@yahoo.com

Alicia, we havent had much success with the pectin yet. We tried the powder and the type we bought was bitter and made anything we mixed it with thicker so we have quit with that for now. I plan on trying the other types as soon as I can and will let you know how that goes. I also know that alot of other parents use probiotics too, you can purchase them in pill form and also things like yogurt has natural probiotics in them.....

Again thanks...feel free to contact me or make any other additional post or questions....thanks for reading our story!

A New Journey Begins-POTTY TIME

2009-04-20T11:18:00.000-07:00

We made the trip again to Cincinnati to see Dr. Levitt, this time for a check up. Dylan had the dreaded rectal exam but with the wonderful news that there is no scar tissue, which is fantastic. Dr. Levitt and I discussed Dylan's bowel habits which at the moment is loose consistancy and more frequent then normal children. Dr. Levitt has us trying Pectin, to thicken the stool for two weeks and then after the two weeks we are to add a little imodium to slow the colon down. Since Dylan is 3 now he also wants us to at least try potty training by the time we go back to see him in six months. Im not sure how well Dylan will do with this, he is absolutely terrified of the toilet. I have encouraged him and tried to get him to sit on his potty chair, just for fun, and he screams and cries, so actually having to poo in it isnt gonna make him happy either. But we are just gonna take our time, give it a shot....no need in rushing or pushing. When the time is right he will master it, until then we are just on a trial and error experiment with meds and trying to find ways to get Dylan to use the potty. Other than this all is well at the moment, and I am more than grateful Dylan is doing so well for a change. Our Hirschsprungs journey is far from over, just starting a new chapter which is titled POTTY TRAINING.

♥ Happy 3rd Birthday to Dylan ♥

2009-03-27T02:18:00.000-07:00

Today is Dylan's 3rd Birthday, of course his birthday is a day to celebrate. I can't help but to look back 3 years ago and remember my baby being born with such a rare disorder that I thought I would lose him. In his short time here on this earth he has been through more than most adults have. He had his first helicopter ride at 2 days old, his first surgery at 3 days old....and through the years several more surgeries but yet has pulled through everything because he is a fighter. I admire his strength more then anyone will know. Dylan has dealt with more bad days then good being sick or in pain or recovering from surgery, or dealing with the uncomfortableness of daily irrigations but most days still plays and smiles like hes not had a bad day in his life. Celebrating his 3rd birthday is special, just as any other birthday he will have, we will take the time to look back and see how blessed we are to have him, and what he has overcome, and thank God for all he has done for Dylan.

Children who suffer

2009-03-12T03:39:00.000-07:00

There are so many sick kids in the world, it breaks my heart to see this. Dylan has suffered on and off since birth with numerous illnesses and aches and pains. Its hard to watch your child suffer knowing there is nothing you can do about it. Dont get me wrong I am more than thankful and blessed that Dylan is as well as he is, cause I do know there are sicker and terminally ill children out there. Our visit to Cincinnati Childrens Hospital was a real eye opener for me, I saw children in such bad shape that I would cry...absolutely heartbreaking. It makes you thankful and makes you hug your children tighter thats for sure.

Dylan has been sick twice since his surgery in January. The most recent episode is going on now, and I have felt the need to vent which is the reason for my post today. This last surgery was a procedure to fix Dylans problems but yet we are faced with the same type of symptoms and problems we had before, so of course I ask myself...WHY did I put him through the awful experience of the surgery and the pain he indured afterwards if things were gonna end up being the same. Dont get me wrong, he is doing ok, but he gets so sick with stomach bug symptoms so often and it is really hard to watch him suffer with this. Last night he just cried and cried because he was in so much pain, and then after vomitting he finally quit crying and went to sleep. His bowel movements when he is sick like this literally stinks up the whole house, which is probably the bug or virus itself causing it to stink so bad. I just wonder if theres more behind all the stomach bugs, none of the rest of us get sick when he does this either, and most stomach bugs are contageous. Dylan having problems since birth with his intestines does make him more vulnerable to stomach bugs, and he has had more than a dozen in the past year.

With the help of God, I pray things get better as he gets older. All I can do is hope for the best and pray as much as I can.....There is a reason for everything but I will never understand why we have to see children suffer.....

Hanging in there...waiting for some type of change

2009-03-11T06:43:00.001-07:00

So we are aproaching Dylans 3rd birthday, it has been a long journey with Hirschsprungs that Im sure is not even close to coming to an end anytime soon. Dylan has been doing well, having bowel movements, eating like hes supose too, and mantaining his weight. Ive kept quite about the after math of the surgery and hospital stay but now Im beginning to get baffled. Dylan spent 2 weeks in the hospital, and ever since then my child is just not the same child. Anyone that knows us, knows that Dylan has always been well-behaved, very sweet and loving. Its turned into the complete opposite since this last surgery, its like he has just snapped and turned into a different child. From day 1 back at home it has been exhausting, dealing with tantrums and screaming all the time. The first week home from the hospital was very upsetting, instead of enjoying being home, relaxing, and resting, I spent most of my time trying to control Dylans tantrums and fits. He did finally calm down some, but still almost 3 months later he still doesnt seem to be himself. I have no idea if its the irrigations, or if theres something bothering him, if he keeps an upset stomach, or has pains, he doesnt tell me anything, but all I know for sure is he is very determined to throw fits, almost like going through the terrible twos at age 3. Im hoping things will get better, maybe once he establishes a poo pattern and his bowel movements get more normal he will come out of some of this odd behavior, but until then all I can do is hope and pray things get back to normal.....this surgery was suppose to help him not change him. Its just been really odd.....

Post op Check up-things seem to be ok!

2009-02-21T16:50:00.001-08:00

Dylan went for a check up Feb. 17th with his original surgeon Dr. Beals. We had been scheduled to go back to Cincinnati to see Dr. Levitt but had to cancel due to the weather being bad so we went ahead and made an appt with Dr. Beals for a check up, he was there during the whole procedure and knew exactly what happen and was perfectly capable of treating us for a post op appt.

Everything went well, Dylan seems to be recovering fine. Dr. Beals told us Dylan only has a third of his colon left but that there is enough left that he doesnt think Dylan will have anymore problems. After the appt Dr. Beals wanted us to take Dylan to get an x-ray, which is what Dr. Levitt wanted us to do when we came to him. We still havent heard the results from it but Im sure no news is good news.

With all that Dylan has been through, meaning all 4 surgeries, we know that its gonna take time before Dylans bowel pattern is normal and he probably wont potty train like other kids, but we can only take it one day at a time and pray for the best. Dylan has also already had a stomach virus which he seems to get rather easily, and alot more frequently than normal kids. As for now, we are just hanging in there yet again and hoping everything soon returns to normal and hoping we dont have to deal with enterocolits, which is a type of infection kids can pick up after a pull-thru surgery. Dylan had "EC" once after his second surgery and was hospitalized and given iv anitbiotics for 5 days, so we are praying to avoid this, this time around.

Thanks to all of you that stop by to read and keep up with Dylans updates. I will post again if we go for another check up. We are hoping to take Dylan back to see Dr. Levitt in the next month or so, to see if he is well enough that we can stop the daily irrigations.

Re-do Pull-thru (Jan. 6, 2009)

2009-01-28T06:20:00.001-08:00

Our new year began with heading out to Cincinnati for Dylan's re-do pull-thru surgery. Everything went very well, there was no complications with bowel prep, and after surgery we found out from Dr. Levitt that Dylan didnt have to have as much of his colon removed as initially expected because the rare ischemic stricture that was there before had healed up on its own and went away. Although I did get shocking news that Dylan now only has 10 inches of his colon left. This was a surprise to me because we were told after Dylans first 2 surgeries that only a small portion was removed, both times. Dr. Levitt said he only had to remove a small portion but now Dylan only has 10 inches left, most peoples colons begin on the right side and comes down to the rectum on the left side and measures around 5 feet long, but now that Dylans is so short his goes from the small intestine and straight down on the right side. Im full of questions that are unanswered and will hopefully get those answers at Dylans follow up appointment next week.

Recovery at home has went wonderful, he has done so well. The only problems he has had is losing some weight and a nasty rash on his butt, which is expected for any child after a bowel resection. Right now we are taking things one step at a time, and hoping Dylan is on his way to living a normal and healthy life since having this medical problem taken care of. We are hoping the struggling is over and that we can close this chapter with Dylans Hirschsprungs journey and some day look back at the experience as memories. He is truly an inspiration to me, he has been through so much and still smiles and laughs all day, his struggles seem to have affected him in a positive way I think. Just hoping and praying that everything continues to go well after this.

Update: Dylan's hanging in there, waiting on surgery

2008-12-14T18:54:00.000-08:00

Yesterday was a week since we came home from the hospital, the irrigations are torture but are helping Dylan so much. He is back to his normal weight of 36 lbs (he was a little over 40 when he was sick, probably from the stool backed up for so long). Ive come to realize the irrigations arent so bad as long as I can keep him occupied with something else, and I know its needed so I just have to put on my brave face and talk positive to him. He is truly a big boy, and hes being so brave and happy considering the problems hes had.

Other than that we are preparing for the holidays, the kids are getting really excited for Christmas. And I know "Santa" is gonna bring some good gifts and Dylan will get to take some of them with him to occupy him while hes in the hospital. So as of right now, we are 21 days away from heading out to Cincinnati.....nervous of course, but hoping everything continues to go smooth until then.

Best wishes to you all!

It's official-Biopsy shows Dylan still has Hirschsprungs Disease

2008-12-10T18:44:00.000-08:00

That dreadful anticipated day has FINALLY arrived. Ive been emailing back and forth with the nurse of Marc Levitt's office, keeping in touch every day to see if the results of the biopsy are back. Sure enough I finally received that email with the results this evening. And here they are:

Catrina,

The biopsy results did come back showing that some part of his bowel is aganglionic, meaning that he does still have Hirschsprung's bowel remaining. So Dr. Levitt can perform the pull through to remove that portion of bowel. The next available date is the first full week of January. Will this work for your family? If so we can go ahead and schedule the surgery and send you an itinerary.I look forward to hearing from you.

I have since emailed back with tons of questions, and asking them to call me. Im so shocked by the fact he did fairly well for 2 years and then WAM we are at the beginning all over again....same diagnosis-same surgery. It's really scare to see your child go through the same thing all over again.....we really thought we were out of the woods, and this goes to show were right back where we started. There's no one to blame, as far as Dylan's surgeon that initially did his first diagnosis and pull-thru, I sill have the most respect for him, he helped us in times that other doctors would'nt even listen to me or take me seriously. I honestly have him to thank this time around, if it wasn't for him taking me seriously this problem would have never been found, although it did take someone else to find it. No one is God, and everyone makes mistakes, thats a common fact. Dylan's first surgeon will always hold a special place in my heart just because he is generous, caring, and really takes the time to listen to the patients parents concerns. Again without him we don't know where Dylan would be at the moment, or what kind of shape he would be in.

So we are all set for surgery on January 6th. I'm doing my best to stay positive although so many things have went wrong. Dylan is now in the care of one of the only specialist that treats this rare disorder, and I have faith that he is in good hands and will be well taken care of.

Stay tuned for more updates, thanks to all that are reading!

Cincinnati Children's Hospital-seeing the specialists in colon disorders

2008-12-10T18:00:00.000-08:00

Upon arriving at Cincinnati Children's Hospital from the other hospital in Lexington, I felt a great deal of relief because I knew Dylan was going to be in the best of hands. Dr. Marc Levitt has a wonderful reputation, and from meeting him I can honestly say he has a wonderful bed side manner as a doctor as well.

We first had to register, go through Dylan's history and update them on Dylan's current issues. Once this was done, it was time for an x-ray. Not long after was when we first met "the famous" Dr. Marc Levitt. He went over the x-ray with us and said Dylan still had a blockage, he was not to have anything by mouth foods or liquids and instructed the nurses to start irrigations immediatley. He was the man with a plan, his plan was to get him cleaned out that evening and then the next morning get an x-ray to make sure the obstruction was cleared. If everything was clear on the x-ray he wanted a contrast study done first and then later in the day would take Dylan to the OR to perform yet another rectal biopsy. Dr. Levitt explained to me they had the most qualified professionals that specializes in looking for signs of Hirschsprungs Disease and diagnosing it. So the repeat tests were important.

The irrigations worked well and by Thursday morning we were ready for the contrast study, which to ran smoothly and well. Dr. Levitt came and talked to us after veiwing the results and said he could tell by the contrast study alone, that Dylan very well still had a bad part of bowel left from the previous pull-thru surgery he had in 2006. He explained that indeed there was a stricture 50 cm up, but all 50 cm of the bowel from that stricture down wasn't working like it was suppose to which was indeed a sign that this part of the bowel had Hirschsprungs.

We went ahead with the rectal biopsy that evening, those results would prove whether or not Dr. Levitt's theory was true. After that test and he was woken up, they began letting him have clear liquids. My little guy was so thirsty he drunk 2 of the minature sprite cans in less than an hour. We went back to his room and Dr. Levitt then said he could begin to eat.....and eat he did, that morning he had a donut while waiting for his tray to come up from the cafeteria. He had eggs and sausage and I have never seen a child so happy to eat. He tolerated the food well since his colon was FINALLY empty and free of blockages. He later had some lunch, and the nurse came in and told us the exciting news-WE COULD FINALLY GO HOME! But not until the next day...first we had to learn to do rectal irrigations cause that would Dylan's treatment at home until we returned for his what I now call "re-do pull-thru" on January 6th.

Learning to do the irrigations was easier then I thought. Honestly I didn't think I could do it. But when it comes to keeping your child healthy and safe you will do things you never thought possible or things you never dreamed you would ever have to do for that matter.

After all we were sent home on Saturday the 6th of December on a cold, snowie day. We were glad to finally be heading home, but I was scared of having to go home to the irrigations twice a day, and having to wait for the actual confirmation of the biopsy results. Waiting really makes a parent a nervous wreck. This puts us up to date....right now we are tackling those irrigations twice a day, and although its difficult and I feel like I am torturing my child, I know its all for good reason and needs to be done.

More surgery-hospitalized due to obstruction

2008-12-10T12:59:00.000-08:00

This post will put us up to date, thanks to you that have bared with me to get all this typed up. I know the below posts were long, but wanted to share Dylan's history from the beginning so it would all make sense.

Early Thanksgiving morning Dylan woke up at 3am holding to his stomach. When I looked I could tell it was distended and could hear it grumbling. Felt of his head and sure enough he was running a fever. My first thought was UH OH, this could be serious this time around. We had been through this before with re-occuring stomach bug episodes but this time it concerned us more knowing that he had a rare stricture, his bowel movements had slowed down, and we were basically not getting the medical attention that Dylan needed, we were waiting and worrying that he would get sick. Sure enough our worst night mare was coming true. All day Thanksgiving day he didn't eat much, he just wasn't himself. Time passed on, he just had some sips of juice and a bite of his favorite snack which was chicken nuggets, all day long. He went to bed early and was up at around the same time the next morning vomitting. I almost expected this just with the way things were starting out the day before. I tried keeping him hydrated, after several times vomitting through out the day I decided to call his surgeon, his office wasn't in since it was the day after Thanksgiving so I left a message and had him paged so he could call. At his previous office visits he had stressed how important it was to watch for signs of infectons or obstructions and I had that gut feeling that this is exactly what we were dealing with. I waited around after a few hours and felt that I needed to get him some kind of medical help, at this point he was weak and seemed life less, just laying around. I took him to his regular pediatrician, explained the problems he was having and he actually had enough nerve to look at me and say "Well mom, looks like you need to get him to Cincinnati sooner, theres really nothing I can do for him". I believe I probably turned every shade of red because I was so mad that he did nothing for Dylan. So here I was with a sick child and no medical help. I could only pray that this would pass and hopefully was just in fact a stomach bug.

The day went on, Dylan still refused to eat. When he did drink it would just come right back up. His dad and I were really worried at this point. I was so let down by his medical professionals that were suppose to be there for him. FINALLY, at 9 pm his surgeon returned my call, I was so relieved that finally I had someone to help. Turns out his pager had torn up, which is why he was just returning my call. I explained what was going on with Dylan, and how it was a little different than the other times he had these episodes, this time we didn't have any diarreaha and usually when Dylan would take these episodes he would have really foul smelling diarreaha. He then gave me his cell number and told me to keep a close eye on Dylan and try to get him to drink as much fluids as possible, if this was indeed a stomach virus is should subside by morning. I was told to give him a call the next morning to let him know how Dylan was. We prayed through the night that he would start feeling better. It was so heart breaking to watch Dylan, he was unlike his usual self. Usually he was the happiest, most playful toddler and this day he was just so life less. He would lay around mostly, throw up a few times, then try to get up and play but when he did he would stop lean against the wall and hold to his stomach in pain.

He didn't stop vomitting through the night, by this point he had nothing left to throw up. I called the surgeon and he told me to bring him to the hospital where he practices which was 3 hours away (yes very sad when you have to travel that far to get medical care). When we arrived at the hospital the doctor had already let them know we were coming and left orders for Dylan. We had blood work, x-ray and was started on IV fluids. Later that evening Dylan's doctor came in reviewed the x-ray and blood work. The blood work didn't show any signs of infection which was absolutely a great start, but then came the bad news, the x-ray showed 3 dilated loops in the bowels which was a sign of an obstruction. He was taken up to the floor and admitted, started on a clear liquid diet and the doctor planned on trying enemas, and then possibly a rectal biopsy to confirm if in fact it was just the stricture causing problems or if it could indeed be more Hirschsprungs left behind from the first surgery. This rectal biopsy was suggested to Dylan's surgeon by Dr. Levitt in Cincinnati, he thinks if a child is still having problems after a pull-thru surgery that this test should be done to make sure there isn't any diseased bowel left. The nurses started with enemas, it did work, which relieved alot of stool and of course pressure off of his stomach. The next day he was taken to OR and had a rectal biopsy done. His dad and I waited nervously for the results, in the mean time the doctor explained to us, that if the results came back and showed that it was just the stricture that he wasn't gonna wait to send him to Dr. Levitt that he would just do the operation himself since he felt this was causing Dylan to be so sick. We kept our fingers crossed, hoping that indeed it was just this stricture and it could be taken out and then my little Dylan could be on the road to recovery. We were certain this would be the case, we really had it in our heads that these results would show this was the only problem. We decided while Dylan was resting and feeling ok, and his grandparents were there by his bed side that we would run home (3 hours away) pack some clothes up since most likely Dylan's surgery would be the next day so we knew we would need more clothes cause we would be there a week or so after the surgery.

While at home, I got the call from the surgeon, my heart racing and my voice shakey I answered the phone as calmly as I could. Sure enough I was overwhelmed with the results, the biopsy showed more confusion, not the results the doctor wanted at all. These results showed the oppostite of what he wanted to see, he was hoping to see good ganglion cells and nerver fibers, which would mean he would be able to go ahead and remove the stricture and Dylan would be fixed. Instead they showed no nerve fibers, which he then explained to me could be Neural Intestinal Dysplasia. These nerve fibers are the nerves that send messages to the brain that the colon is full and indeed needs to empty which signals the ganglion cells to do their job and start moving stool through the large intestine and then out the rectum......So here we were with yet another problem and possible different diagnosis than Hirschsprungs Disease.

Dylan's doctor then decided it was a good idea to call in the "big shots" at Cincinnati, he knew he could not deal with yet another rare problem, and felt that Dr. Levitt would be the only one to take care of this problem for Dylan.

We talked with Dylan's doctor more about the results, and his hopes of Dr. Levitt being able to help Dylan once we got there. He had us transferred the next morning. We were off to see yet another doctor thinking we were in route of finding out the problem and getting it fixed...what we didn't know is that once arriving at Cincinnati Children's Hospital and seeing Dr. Levitt, we were going to get a completely different opinion and a whole other diagnosis.

The start of something else, yet another problem

2008-12-10T08:38:00.000-08:00

Dylan conquered his first surgery like a pro, he did have some problems a few months afterwards with entercolitis and scar tissue. After several months of check up visits for dilations and eventually having a balloon dilaton in OR to stretch out the rectum to get rid of scar tissue, Dylan was finally on the road to a successful recovery, or so we thought anyways.

Dylan began struggling with having too many bowel movements a day, it was almost like having diarreaha on a daily basis. He then struck ill with stomach virus episodes, usually these symptoms would only last a day or so but they were terrible. Finally after dealing with these problems on and off for a year and a half we saw his surgeon again in August of this year. I was determined at this point to do anything to help straighten out Dylan's bowel habits. At this point he was two years old and potty training wasn't anywhere in the picture due to his bowel movement being so loose and so often. Dylan's surgeon finally realized what were dealing with, we described all the episodes of the stomach virus symptoms and the fact that Dylan had never had a formed bowel movement. Dylan's surgeon felt that since Dylan was 2 1\2 years post surgery that his bowels should be formed and slowing down by this point. He suggested trying a dairy free diet for a week to see if maybe Dylan had an allergy to milk products and call him with the results. We tried this, there was no change in the bowel movements. He then felt it was nescessary to do a colonoscopy, this would show him the entire colon and identify any problems if there were any.

(fast forward to September)
As parents we wondered if this test was really needed, we wondered if we were putting him through this for nothing but then realized its better to know if there is a problem then to let things get worse. We had the test done, while waiting, I was really positive we would get good news and maybe start on some type of meds to bulk up the stool or even maybe try a bowel management program. Dylan's surgeon came out with pictures in hand, his first words were "Well, I'm glad we decided to go ahead with this colonoscopy. I've found the problem." My heart then sunk into my stomach, here I was being so postive that nothing was wrong and that I was probably over reacting al; along. Turns out his doctor couldn't even complete the colonoscopy, he entered the rectum with the scope and could only get 50 cm into the large intestine before running into an adhesion, possibly more scar tissue but this time it was even more rare, never before had he seen these type of results this high up in the colon. He explained he got a biopsy from this area and was testing to see if this was possibly Inflammatory bowel disease or if it was indeed a rare ischemic stricture, which is a blood vessel that is damaged and dead, which causes scar tissue to build up and no oxygen to get to that part of the intestines.

We waited impatiently and nervously for these results. It was quite scary considering if it was indeed an ischemic stricture Dylan would need another surgery to remove this part of the intestines. His surgeon had admitted himself that he had never treated a case of this before, and he had been a surgeon for 25 years. But of course, being the most rare diagnosis and so uncommon it was indeed the results of the biopsy, this specimen showed this part of the bowel was dead. Dylan's doctor then began setting up for us to see Dr. Marc Levitt in Cincinnati. I had researched Hirschsprung's Disease so much that I had remembered reading about Dr. Levitt and the fact that he was a pro at treating Hirschsprung's Disease, he had done several surgeries, world wide for this rare disorder and help establish the only Colorectal Center for children in the United States. This man dedicated his life to children who have defication disorders. I was very confident that he could fix Dylan's problems.

At this point we were playing the wait and see game. Dylan had a few test done and we were in the process of conversing with Dr. Levitt's office to set up a consult and more test so he could diagnose the problem himself. Like I said, we played the waiting game for the most part, very nerve racking from a parents perspective to just wait things out when your child is possibly sick with a rare problem. At this point Dylan's bowel movements had slowed down to every few days and this was signs of a partial obstruction. We were still in disbelief of the new problems Dylan was diagnosed with. We stayed positive and waited to hear from the medical professionals in hopes that they could get Dylan taken care of before the problem turned into anything more serious.

Part 2 of Dylan's Journey with Hirschsprung's Disease-The corrective surgery

2008-12-10T08:02:00.000-08:00

After finally getting the diagnosis of Hirschsprung's Disease, the next step for Dylan was a corrective surgery called a pull-thru. His surgeon described this as removing the diseased bowel that didnt have ganglion cells (that are in charge of pushing the stool through the colon and out of the rectum) then reconnecting the good bowel to the rectum so we could get rid of the colostomy and hopefully Dylan would be a normal child again.

We were skeptical but had confidence in Dylan's surgeon. We scheduled and went ahead with the 4 hour surgery. Recovery was difficult the first few days. Of course he was in pain and very uncomfortable, which is the one thing any parent hates to see. He spent a week in the hospital recovering and began to tolerate feeds and finally had his first bowel movement. Sounds crazy but I can honestly say I've never been so happy in my life to finally change a soiled diaper. I always said some parents take these things for granted, I, on the other hand cherished it because at one point we didn't think this would ever be possible.

Dylan at this point was 6 months old, he was thriving, growing and just a happy baby. A few weeks after surgery he got sick with an enterocolitis episode and was hospitalized for a few days, then required dilations due to scar tissue building up from surgery. After a few months of struggling we finally got our boy back on track and was thrilled that he was on his way to living a normal life just like other kids his age. His life was ordinary, just a developing infant slowly turning into a young toddler and we enjoyed every minute.

At his first birthday we celebrated with joy, because at one point we didn't know if we would see this event. He had several check ups with the surgeon and we discussed his bowel patterns at this stage. At this point his stools were soft and he had several bowel movements a day. The doctor seemed confident though that things would improve and that we just needed to give his intestines a year to heal and work properly. So we waited, time was on our side, and only time would tell.

Dylan's journey from birth with Hirschsprung's Disease

2008-12-09T20:40:00.000-08:00

All expecting parents have the vision and hopes of having a healthy baby. On the day that Dylan Chase was born (March 27, 2006) he was perfect and seemed as healthy as any other newborn baby. He was a healthy weight of 8 lbs and 7 ozs and 20 inches long. His father and I were ecstatic to have a healthy newborn baby boy, or so we thought.

Day two of Dylan's life began to turn from healthy and normal to odd and uncomforting. The nurses couldn't get him to eat and here he was not even 24 hours old and hadn't passed meconium, which is the plug that holds in the stool while the baby is in the mother's uterus. The nurse had came to me and explained that if Dylan didn't have a bowel movement by the time he was 24 hours old they would have to move him to the NICU. I was a little concerned, but in all honesty I was clueless at the problems that were yet to come, my thoughts were "he has too poop, all babies poop". But that was not the case at all.

We enjoyed our time with Dylan, holding him, cuddling our newly born baby. We never put much thought to the possibilities of him going into the NICU. We went on as though everything was normal and looked forward to taking our new baby boy home the following day. Little did we know that wasn't going to happen.

The day went on, still no bowel movement and still not feeding at all. That evening a doctor from the NICU came in to talk to us, he explained that Dylan should have already had a bowel movement, should be eating, so he was gonna take him to NICU to keep a closer eye on him. By this time I was concerned, but hoped things would turn around on their own over night. That evening the specialist then returned explaining if Dylan didn't have a bowel movement by the next day (meaning he would be 48 hours old) they would have to send him to UK Children's Hospital. This indeed opened my eyes that something was wrong with my baby, the question left was what is it and can it be fixed.

Waiting over night was worrying, I called the NICU several times (annoying them I'm sure) asking if Dylan had yet had a bowel movement. All through the night I got the same dreadful answer "no, nothing". After finally getting some sleep I was woken by the specialist once again, this time saying they did x-rays and there was dilated loops in Dylan's large intestine. Of course I had no idea what that meant, and questioned him with everything that came to mind. He then told me that the signs and symptoms Dylan had was pointing to a rare disorder of the large intestine called Hirschsprung's Disease. I didn't have to hear anymore before bursting into tears, the thoughts running through my head were indescribable, "disease, how did he get a disease, did I pass something on to him, did I cause this". The scariest moment in my life, I had no idea what it was, if it would cause my baby to die, if it was curable, would he be sick for the rest of his life. I had so many unanswered questions. Even the specialist couldn't answer all the questions I had, he, being a specialist still didn't know much about it himself. The only thing he could tell me was sometimes it can be treated with a colostomy. He stressed how important it was to get him to UK and get this diagnosed which was something a pediatric surgeon had to do, and there were no pediatric surgeons at the hospital we were currently at. Dylan left that evening by helicopter, our family cried as we watched the helicopter leave. There were so many thoughts and feelings as they flew away with our baby...all we could do is pray that God would watch over him until we could get to the other hospital to be with him. I prayed for God not to let anything happen to my baby not without his mommy there to hold him, and to reassure him everything would be ok.

After arriving at the new hospital Dylan was on antibiotics and immediately the new doctors, specialist, and surgeon began testing. But we were still not out of the woods, but thankfully at a hospital that was more educated and had the abilities to care of such a rare disorder and sick baby. The first day there, they mainly did test, x-rays, and enemas to try to get Dylan to have a bowel movement. By day two Dylans colon had had enough, while out getting something to eat and then back to the hotel to rest up and shower, we rang the hospital to check on him. I will never forget the nurse telling me "Mrs. Johnson, the doctor has been trying to reach you" she then put the doctor on the phone. Seems while we were gone, Dylan had become very sick. They performed another x-ray and found that his bowels had perforated (torn apart) and he was rushed to emergency surgery. Of course we ran straight to the hospital and into the surgery waiting room. After what seemed like eternity, we saw Dylan being wheeled by in his crib, the surgeon then came and spoke to us. He began telling us that he had to fix a tear in the bowels and that it was still not known what caused the tear. At this point we didn't have the for sure diagnosis of Hirschsprung's Disease and had been told it could be a few other things such as a dead part of the bowel that didn't develop right.

It was a long road to recovery, two weeks to be exact. Since Dylan was a small baby, and had such a big wound from surgery, when he cried his wound burst open. Instead of fixing it the surgeon thought it was best to leave it alone, but to keep it clean and covered. Dylan began to tolerate feedings, and began stooling out of his stoma (the part of the intestine brought through the skin to make the colostomy so his body could dispose of stool). He was in fact improving. Finally after two weeks and five days (and learning to dress and care for his wound) my baby finally got to go home from the hospital for the first time. He was so little almost like a preemie, he had lost weight with the surgery and not being able to feed. We took him home and began nursing him to health and helping him get use to life away from the hospital.

Dylan did fine, growing, learning, and developing like a normal infant. His colostomy was alot for me to take care of, he couldn't wear colostomy bags for a month or so due to his wound needing cleaned and dressed everytime he would have a bowel movement. I did it with pride though, knowing this would be temporary and we just had to have the colostomy long enough for him to grow and gain weight so he could have his corrective surgery which is called a pull-thru, to reconnect the good intestines. In the mean time we traveled back and forth for check ups with his surgeon in Lexington who performed several biopsies. We finally got a diagnosis of Hirschsprung's Disease in June, which was a sigh of relief that it wasn't anything else but still we knew there was gonna be another surgery which was scary to think about.

~This concludes Part 1 of Dylan's journey with Hirschsprung's Disease~

This story will continue in sections because it is so long and I only have so much free time with having 3 kids at home....best wishes to you that are reading.