Kindergarten

In the summer of 2012 I took Greysen to his 5 year check up and wanted him to get his kindergarten shots because we were thinking of sending him to kindergarten. He is a July birthday so he would be a young 5 year old but we felt he was ready (besides the fact that he still could not poop on his own). I took him to the visit and explained to the doctor that he was still having issues. The doctor assured me that constipation in kids is very common and that he would eventually outgrow it despite the fact that we had been dealing with this for 5 years. The doctor explained to me that we needed to do a clean out at home and this would give his colon a "fresh" start and from there we would give him miralax everyday and get him on a good bathroom routine/schedule. The cleanout was supposed to go something like this: one dose of Ex-lax everyday until results. By day 3 I called the doctor because I was concerned that still nothing had come out and I wondered how long I was supposed to give him the ex-lax. The doctor said to just keep giving it to him until he pooped so I did. By day 7 I started to really worry because at this point I felt like I was poisoning my son. What goes in must come out right?! So where was it and why wasn't it coming out?! I remember asking Kyle several times, "how is it possible that a child can have 7 adult doses of ex-lax and still nothing is coming out??! Finally, we got him cleared after 8 days! We started the regimen of miralax and I was pleasantly surprised at how well it seemed to be working. I was also glad for a laxative that is safe and not absorbed into the body. You know the warnings on laxatives say do not use for more than 7 days? This apparently does not apply in Greysens case. Anyways, as long as we didn't miss a day he seemed to be staying very regular and it seemed like things were starting to get better. The only problem was that as soon as we missed one day of giving him the miralax we would be back to square one. This is the problem with short segment Hirschsprung's disease... it can be manageable at times but then at other times it can be a disaster. It's why I would call and schedule an appointment for him to see the doctor but then think he was getting better so I would cancel the appointment. The other problem was that we had very bad insurance. It was hard for me to keep an appointment that I knew I would have to pay $130 just for the doctor to tell me to go home and give him miralax or ex-lax. I can get that kind of advice on the internet for free! Most people will ask "Isn't your son's health worth any amount of money?" Had I known at the time that something was wrong with him I would say yes but at the time every doctors visit would end in the doctor telling me he was just constipated and that he would outgrow it. Its hard to convince a doctor that something isnt right with your child and I wasn't willing to keep paying them to do nothing. Finally, we were able to apply for healthy Montana kids which is an insurance for middle class families. The income limit for our family is $75,000 dollars in which my husband responds, " I will be happy the day we don't qualify because that means we are making at least $75,000". He is funny and even more funny because he knows that he is a pastor and you dont go into that kind of job for the money:) Anyways, after we got the insurance it only cost us $3 to see the doctor which to me didn't even seem fair. After paying $130 per visit $3 seemed like theft! I'm not sure if this was the right attitude but I started taking Greysen to the doctor a lot after that because I figured it was basically free and maybe if I took him enough they would finally do something! They kept us on the miralx regimen and said to come back in a few months if it wasn't better. Of course some weeks it was better and some weeks it wasn't so September came and we decided to send Greysen to Kindergarten.

We were already concerned about sending Greysen to Kindergarten because of his age but it concerned me even more that he was 5 years old and still could not poop on his own. For whatever reason in Billings, MT  "Red Shirting" is a common practice. I really didn't wanna wait another year to send Greysen. I assumed he would be a tad younger than some of the kids but I never imagined most of them would be 6, even 7 years old! Talk about red shirting to the extreme. I was a bit annoyed because while he was doing great for his age he was actually doing below average compared to the rest of his class.
You can't blame a 5 year old for not keeping up with 6-7 year olds! So after a month of school we decided (with many tears) that we would take him out and wait until the next year. Kyle and I both prayed about it and knew its what we needed to do. We felt very secure in our decision but it still didn't make it easy. I remember telling the Lord, "I know that one day we will look back and be glad we had the wisdom to make this decision." Little did I know that would only be 7 months later...

A More Recent Update

Hey everyone! I know that I have been blogging Greysens story from the beginning and I wanna do this so that others dealing with Hirschsprungs can follow and compare our story to theirs. Each case of hirscsprungs is unique to that individual but sometimes it is nice to read similar scenarios or to see that someone else has dealt with some of the same things. However, I thought I better give you all a more recent update!

Greysen is now 7 months post-op from his pull-thru surgery. While he is doing much better than he was before the surgery he is now dealing with a whole new set of issues. The misconception with having surgery is that he is fixed and does not have hirschsprungs disease. From the words of his specialist, "once hirschsprungs always hirschsprungs." He will never be cured and I have come to terms with this however there are things we can do and are currently trying to do to increase his quality of life.

About a month ago Greysen started physical therapy to help strengthen his pelvic floor. The specialist wanted to try this before sending us back down to Denver. Its a very specialized type of physical therapy, and while I feel it may help a little, I am not convinced this is the cure-all to his issues. After 6 years of not being able to use his bowel muscles correctly its inevitable that these muscles need to be re-trained and reconnect with his brain. Because his intestines could not move the waste through his body to his spinchter his body never had the urge to go. So basically his body has never been trained to hold OR release waste. Another issue that can cause this is called a stricture due to the surgery. The area where his colon was reattached can form scar tissue causing the hole to become to small for anything to pass OR it can cause tension in that area which in turn causes the spinchter muscle to tighten or release (spasm) which then can cause him to either have an  accident (release) or be unable to have a bowel movement (tighten).

7 months after surgery he should not be having accidents. It has been a very hard couple of months trying to decide where to go from here. He is almost 7 years old and the older he gets the more anxious he gets about these issues that he cannot control. I want for him to have a good childhood and I want him to be free of teasing or embarrassment. It is hard to see the time go by and to see no improvement. My heart hurts for him. I hurt for the times he may be embarrassed. I hurt for him feeling that these accidents are his fault. I want him to enjoy a childhood where he doesn't have to worry about such serious things. I'd love to send him to school or a friends house without explaining to them why he has a change of clothes and how to respond in case he does have an accident. I cry picturing him stuck in a bathroom not knowing what to do or who will know. Its an emotionally exhausting disease and I hate it.

We have an appointment next week with the specialist where hopefully we can get the ball rolling. Kyle and I will be requesting a referral back to Denver so that the surgeon can see Greysen and decide where to go from there. Its possible that Dr. Flass may be able to evaluate a possible stricture here in Billings but we will also be requesting that Greysen participates in Denver Children's hospital's bowel management program. It is the best in the country along with one in cincinatti and is used as a model to establish other bowel managment programs around the country. Our hope is that we can get all of this taken care of in July while Kyle is between jobs. In the meantime we are trying to sell our home as well! Transition is never easy for us let alone dealing with a child with "special needs". The one thing that keeps us strong is knowing that we are where God wants us and he is going to work out the details. Our hope is that by the beginning f the school year Greysen will have made a lot of progress and will be able to function like a normal 7 year old and be comfortable at his new school and meet new friends!

In the meantime, I will continue to pray for strength and for wisdom to raise our son in a way that makes him feel normal, loved, and accepted. We appreciate everyone that follows Greysens story and holds us up in prayer!

God can use poop...

Continuing from here

The next 2-3 years were kind of a blur. We used enemas once a week to get Greysen to poop.We kind of, without realizing it, had a system to get him to go. Sometimes I would physically feel his pain and sickness. I just remember thinking, "He has not pooped in 7-10 days this MUST be poisoning his little body." It would make me frustrated and cry. Part me thinks it was my sense of urgency to literally get that crap out of him that kept him alive. I would do whatever it took. I would sit for hours on the bathroom floor while he tried as hard as he could. I would have to coach him through it every few minutes like a husband coaching a wife pushing a baby out. At one point he pooped and then immediately vomited everywhere. I kept telling Kyle, "I think he has a blockage." Sometimes he would even shake afterwards and be very cold. I can't even type this without crying. My heart just hurts for everything he went through but also because he could have died...should have died. I now know that enterocolitis is a huge risk factor in kids with Hirschsprungs disease and these symptoms are exactly what he had on more than one occasion. When you have waste built up for so long and then it is released suddenly, the bacteria enter into your blood and that is why you vomit and get very sick. It is truly hard to believe he didn't die. That may sound dramatic but it is the truth. It is more than gut wrenching to watch your son be so sick and not be able to help him.

Today is Good Friday and I can't help but sit here, as I type this, and wonder, "Is this a glimpse of how God felt as he watched his Son suffer on the cross?" He sent his one and only Son to die for us. For people that would choose to reject him and hate him. He knew and knows that not everyone will accept him yet he still sent his one and only son to die for us! I know that some people may say, "If God is so great then why did he let your son suffer?" I say, "God is so great he SAVED my son from suffering... He saved him from eternal suffering." There are things in life that seem unbearable, unfair, and unjust. Its part of life. We live in a sinful world but its through those trials and situations that, if we look to God, we can see him working, protecting, and shaping us. I would have never asked for my son to have Hirschsprungs but there are invaluable lessons I have learned through it and hope that he will too. As he grows older, I hope that he can be a beacon of light and hope in this world. If God can use POOP to teach us lessons then he can do anything! If we look for the good in things we will find him. If we listen for him we will hear him. He is there. He is everywhere. And just in case you didn't know it...he loves you. I hope that this blog encourages you and brings a little hope to any of my readers. I'd also love to be praying for my Hirschsprung's family readers. Leave me a comment with any prayer requests! And if you don't believe in God that is okay too but I would love to still pray for you and your son or daughter. Thanks for reading today! I hope you have an extra special Easter weekend!
  

My superhero

The not-so-special specialist

I'm continuing Greysen's story from here...

At 18 months old, Greysen was referred to a G.I specialist in Billings, Dr. Ofelia Marin. The first thing that should have clued me in was the HUGE parrot cage in her office. I'm not sure why, but it seemed a little odd to me that you would have an animal in a doctors office where people with lots of allergies and medical issues come to visit. #2 was her foreign accent. I love a good accent but when it comes to discussing medical things where the language can already be confusing, then you add in an accent that I can't understand, the two just don't mix. And lastly, she was just a bad doctor. She rushed us through Greysen's history, gave him a rectal exam in a very rough manner, then charged us $300 to tell us he just needed more fiber. At the time, we had insurance but the deductible was high so we basically paid full cost for every visit. I remember feeling frustrated because we didn't have the money to keep taking him back just to tell us nothing was wrong. I'm not sure if other people have dealt with a husband who is upset they just spent $300 for nothing and a wife who knows something is wrong even though the doctors say he is fine. What is a mom to do?!

We left her office feeling a little hopeful that MAYBE he did just need more fiber. He was supposed to have 20+ grams per day of fiber. This is a difficult task for an 18 month old because they are picky eaters anyways. Most servings of fiber are 2-3 grams in each food item and if you can find a yogurt with 5 grams you are doing good. The doctor sold us some ridiculously expensive high fiber juices that contained 10 grams in each juice box. I think it was $40 for 15 juices. Luckily my parents helped us out and were so sweet to buy them for us. Thanks mom!

After 2-3 months of the high fiber diet it didn't seem to help much. The problem was that some weeks it seemed to be helping then all of a sudden he would be backed up again. It really was a tug of war. I would go from being really concerned to thinking maybe he was getting better. I would put off taking him to the doctor, cancel the visit, only to reschedule a few weeks later. I really was confused and torn and frankly didn't know what to do. So back we went to the parrot lady....err...I mean doctor.

This second visit was even more worthless than the first. She felt his tummy, told us to keep up the high fiber diet, and come back in 2-3 months. That visit was also $300....we never went back after that. To this day I do not understand how the medical system can work the way it does. I am paying the doctor to find out what is wrong yet they can take my money and do NOTHING and I cannot demand a refund?? I just PAID you to investigate my child and you told me to feed him fiber. The other thing that makes no sense to me is that she could have run ANY tests she wished. Again, I would be the one paying for it so why wouldn't she have tried something? Anything would have been better than nothing. Even if she had drawn his blood I would have felt that paying her $300 was worth something!

So we went on with life as it was, stuck to a high fiber diet, lots of benefiber, and eventually had to use enemas to get his waste out of him. We had always thought Greysen was a quiet child but didn't realize that it was the build-up of stool causing him to be lethargic. We began to notice that after giving him an enema he would get tons of energy and seem like a much healthier child. Little did we know, things were much worse than we thought...

Hard to believe he is so sick here and we didn't even know it!

Little Sister Harper came along in 2009

Such a sweet and tenderhearted boy

Blog with a purpose

When I started this blog my goal was to raise awareness of Hirschsprungs so that others would not leave the hospital with a newborn undiagnosed. I wanted people to know what this disease is, how to recognize the symptoms, and encourage people to be an advocate for their children. Deep in my heart I knew that God wanted me to write this blog. I doubted my self and wondered why people would wanna read a blog about poop and how would this help others. I decided that it didn't matter. People could choose to read or not. Some may not even understand but thats ok because God asked me to do it so I did. I told myself that even if it helps one person then its worth it. 

Fast forward to yesterday...

My phone and facebook started blowing up with texts and voicemails asking me if I knew "so and so" because their newborn son may have Hirschsprung's disease. It kind of made me giggle. Poop is what I'm known for I guess. The cool thing is that a lot of people may have never even known about hirschsprungs had I not written my blog. The mom of this boy told me she had actually read my blog a few months ago! Now, I don't really know this couples full situation yet but how cool is it that God knew this family would be going thru this and he cared enough to put things in place beforehand?! I don't know how I can help them being so far away but sometimes its just nice to know someone that has been thru it:) 

This has also stirred up some emotions for me. The whole process of getting a diagnosis was extremely frustrating and annoying. I feel for this family. Part of me wants to say, "you will be fine because your son didn't have to wait 6 years like mine did!" But then I remember how annoying it was to have people compare their medical experiences with Greysens. Its not that people don't care but each situation is unique and to compare them is just not possible. I would even go farther to say that this is especially true with Hirschsprungs because each individuals response to treatment is VERY different. Some kids have the pull-thru procedure and are completely normal afterwards. Others may have the procedure and continue to struggle with various issues (like Greysen). I've developed a way of thinking when someone is undergoing a medical crisis and its something like this:

#1-Their experience is not mine

#2-Their experience is real and its most important to them in this moment

#3- There is always someone who is more sick than your child and someone who is more healthy.          Neither of these discredit what YOUR child is going thru. 

#4- Do not talk about your experience unless asked. Its just annoying and makes people feel like their situation is less important. 

And lastly some advice for friends and family:

#1- Do not call or text everyday asking if the results of the biopsy are in (Or any other results for that matter.)

When Greysen had his biopsy we were told the results would be back in 4-5 days. It took 2 weeks! 

If a person says they will let you know the results as soon as they know then they probably will. Especially if you are family, I doubt they will forget to inform you:) It's stressful enough waiting for the results so don't add more stress for them!

#2- don't talk about the time your grandma had heart surgery or your child had surgery (again, unless asked) And definitely don't start that conversation with "We know exactly what you are going through..."

 While you may be able to relate to their situation you have no idea what they are going thru because every person responds differently in these kinds of scenarios. Some people may be freaked out while others may be cool and calm. Personalities play a huge part in dealing with a crisis. 

#3 DO send them visa cash cards/giftcards

When a child is in the hospital its expensive! Kyle and I ate as cheaply as we could and it was still about $30-40 a day to eat in the cafeteria or head across the street to Panera. My good friend Jessica and her mom gave me a $50 visa card and it was the biggest blessing. I spent every penny of that card with a grateful heart. My other good friend Erin gave me a starbucks card. Coffee is what kept me going! I was so grateful for those gift cards and everytime I used them I was reminded of how loved I was:)

And lastly if you don't know what to do just pray! Or ask them what they need. Offer suggestions of how you would like to help and really mean it when you offer. Sometimes its nice to call a person  and not feel bad saying "Hey a meal would actually help us out a lot!" And if you don't know what to do just ask:)

Gastrograph

A few weeks ago Greysen had another x-ray that revealed a build-up of stool despite the fact that he is going to the bathroom everyday if not every other day (bathroom scheduling is a blog in itself which I intend to write for all my mamas of hirschsprungs babies). For some reason his little body isnt keeping up with the digestion process. As fast as his body is processing food its not getting out as quick as it should. The urge to go isnt there either which is a huge set back since right after surgery he was doing great. Yesterday the nurse called and said they wanted Grey to have a Gastrograffin Enema, also known as a barium enema x-ray, done as soon as possible. Under normal circumstance a build-up of stool is not a huge issue but in a person with Hirschsprungs it can be very dangerous and even deadly. Enterocolitis, a bacterial infection of the small intestines/colon, can occur. If left untreated it can spread quickly and get into the blood stream causing a condition known as septsis. Its very scary and a fear that is always at the back of my mind. Any sign of a fever or diarrhea (basically flu-like symptoms) can be the onset of enterocolitis.

The doctor scheduled the x-ray for today and ordered them to give him minimal sedation because he HATES anything involving the hospital or doctors visits. Last time we were at the doctor his heartrate was 220!! In his mind he wants to know if he is getting an IV, are they gonna stick something in his butt, are they gonna draw his blood, is it gonna hurt, what are they gonna do and in what order,and does he get a toy? These are a  6 year olds thoughts! As we pulled into the hospital he said to me, " I wish this was all a bad dream." Talk about making me wanna cry! So we get into the x-ray room and I had explained to him, "This time will be better because they are gonna give you medicine to help you not be scared." So he asks a million questions about the medicine. Is it gross? Is it a shot? Do I drink it?...Then the radiologist asks me when he last ate. He's not being put under so I'm not sure why she is asking me this. He had just had a snack before we came. She then informs me that he can't have the medicine unless he hasn't eaten within 6 hours which he had. No one had given me instructions that he wasn't supposed to eat! So now Greysen is freaking out even more because what I had told him and prepared him for is now changing. After some crying, lots of convincing, and bribing he agreed to do the x-ray without the sedation. A barium xray is not fun! They put a tube in your bottom and fill your colon with a liter of fluid that "highlights" your insides. As if thats not bad enough, they then tilt the table in every direction and ask you to turn from side to side while they take x-rays and you have to do everything in your power to hold the fluid in! It feels like your insides are gonna explode!

So now what? We wait for the doctor to call. He is going to send the results to Greysens doctor in Denver. The possible cause of his problems could be that the sutures where his intenstines were reconnected to his rectum could be healing too tight making it hard for stool to pass. This would mean another surgery:( Another reason could be that he just needs to retrain his bowels. This can be done through physical therapy or the bowel mangement program in Denver. Whatever the reason I know that I just have to keep praying for complete healing for my boy and try my best to not be discouraged. Kyle and I left with a pit in our stomach. I know that people care and are just as concerned as we are but its really hard for me to answer questions. Part of me hates even telling people he is having more tests because I don't have the answers to their questions. Their questions are the same ones I have and dont have the answers to which leaves me feeling even more frustrated and annoyed. My solution is to write about it here. I appreciate each and every person that follows our story. And just to be clear I welcome any questions on this blog:) So... as soon as we have an answer I will be sure to blog about it here!

These are his "I hate the doctors office" faces haha

16 days

As we brought our new baby home from the hospital I was so in love with this little guy. In fact, I hated that I loved him so much because now I became a worrier. I don't like to worry. I tend to air on the side of being under cautious because I just don't want to be a mom that worries about silly things. I didn't want to be the crazy mom bringing her child to the doctor for every little thing. This would later come back to bite me in the butt. I remember when Greysen was 8 weeks old we decided it was time for him to sleep in his crib. I was terrified! A couple I had known had just lost their baby to SIDS so this was a very real fear of mine. I remember telling God, " I don't want to live in fear and I don't want to fret over my baby, I want to ENJOY him!" I remember so clearly God said to me, "He belongs to Jesus. He is yours until the Lord decides to take him and its up to God when he does. No amount of worry or over-protectedness will keep him from dying." From then on I released him to God and made it a priority to not fear over the loss of my children because it was nothing I had control over. As the weeks went on Greysen was fairly healthy. He was eating and pooping great. He was having some episodes of projectile vomiting but the doctor assured me it was probably due to my body producing too much milk which was causing him to eat too much too quickly. When Grey was 2 months old I returned to college. At 4 months old I started implementing formula and by 6 months old he was completely formula fed. This is when things started to take a turn. Everytime I took Greysen in for a well baby check-up I always marked the box that said "do you have any concerns?" I would explain that it seemed difficult for Greysen to have a bowel movement. The doctor would say it was just normal constipation and that its normal for some kids to go only once a week. I wasn't convinced but I thought "These doctors know more than me, I respect their decisions, I don't want to be a crazy mom that insists something is wrong when their isn't." We were instructed to put mineral oil in his bottles and add benefiber too. I should have bought stock in benefiber because he went thru a costco sized can each month! At about a year old we decided to switch doctors because I didn't like how the doctor dismissed my concerns so easily. Dr. Gunville was my husbands doctor as a child so I figured he was getting up there in age and was ready to retire because what else could explain a doctors reason to ignore a constant complaint??? We switched to Dr. Tapia at The Childrens Clinic where the atmosphere and care was a night and day difference! Dr. Tapia listened to our concerns and assured us that Greysen probably just had chronic constipation and to continue giving Greysen the benefiber. FYI mineral oil should NOT be given for long periods of time because it inhibits the absorbtion of minerals and nutrients. That would have been awesome to know from Dr. Gunville who had us giving it to Greysen for over 4 months! So again we went along with the doctors orders even though it seemed like nothing was helping. At about 16 months old things really took a turn again when I realized Greysen hadnt pooped in 16 days! I remember pulling into our church parking lot to meet my husband. I decided to change Greysens diaper and thats when I saw huge lumps in his stomach. I remember crying and thinking something isn't right! I immediately called the doctor and of course had to wait for the on-call doctor to call me back. After telling her the story she tells me he is probably fine and to just continue giving him fiber. He did finally go because I would do everything I could to get that waste out of him. I remember thinking "This MUST be poisioning his little body!" I just cried and felt helpless and frustrated. Once he would go it would feel like I didnt need to take him to the doctor because EVENTUALLY it would come out. It wasnt easy and sometimes took a long time, but eventually he would poop, even if that meant waiting 16 days. The doctors didnt seem concerned about him not having a bowel movement for 16 days but I did finally convince them to refer Grey to a specialist. So, reluctantly, they referred him. And again, I felt like a crazy mom asking to see a specialist when clearly, in their minds, Greysen just needed a better diet and more fiber.