Complications. An educational post.. #51

I wanted to take a few minutes to talk about COMPLICATIONS from Hirschsprung's Disease. I have heard from a lot of people that the internet hasn't been of much help for education. My point exactly. I read a lot of the sites and the stuff they say is pretty off - as far as complications go. That's why I am asking more families like ours to post about their stories. Hirschsprung's is a VERY tricky disease. Almost ALL kids with it suffer complications. The internet makes it seem like this disease is an easy fix, have a surgery and they are cured. NOT AT ALL. This is a LIFELONG illness. A LIFELONG disease that we battle EVERY SINGLE DAY. This blog entry is for education on complications and to talk about some struggles we have had, and some struggles some of our fellow HD families have had.

First I would like to cover some general education on Hirschsprung’s Disease. There are 2 main types of  Hirschsprung’s Disease, known as Short Segment Hirschsprung’s Disease (SSHD for short) and Long Segment Hirschsprung’s Disease (LSHD for short) which are defined by the region of the intestine lacking nerve cells.

In short segment disease, nerve cells are missing from only the last segment of the large intestine. This type is most common, occurring in approximately 80% of people with Hirschsprung’s Diease. For unknown reasons, short segment is 4 times more common in men than in women.

Long segment occurs when nerve cells are missing from most of the large intestine and is the more severe type. Long segment is found in approximately 20% of people with Hirschsprung’s and affects men and women equally.

The rarest forms of Hirschsprung’s are called Total Colonic Hirschsprung’s Disease (or TCHD) or Total Intestinal Aganglionosis (TIA). In Total Colonic the nerve cells are missing from the entire large intestine and sometimes part of the small intestine. And in Total Intestinal ALL of the nerve cells are missing from BOTH the small and large intestine.

Depending on what type of HD you have, really means what your outcome will be. Kids with short segment seem to fare better. Also, there is different protocol for surgery, care, etc depending on what form you have. A lot of the time kids with short segment just get the pull through surgery. Kids with long segment may need a colostomy bag or an ileostomy before they can have their pull through surgery. Isaac did not have a colostomy so I am not well versed in this topic. I am hoping that more HD parents will come forward with their stories so I can post more about kids with colostomy bags and such. What I can do, is talk about Isaac’s surgery and talk about his complications he has experienced.

In children who cannot receive the pull through directly the surgery is done in steps. First, the abnormal portion of the colon is removed and the top, healthy portion of the colon is connected to a small hole (ostomy) the surgeon creates in the child's abdomen. Stool then leaves the body through the ostomy into a bag that attaches to the end of the intestine that protrudes through the hole in the abdomen. This allows time for the lower part of the colon to heal.

Ostomy procedures include:

•   Ileostomy. With an ileostomy, the doctor removes the entire colon. Stool leaves the body through the end of the small intestine.

•  Colostomy. With a colostomy, the doctor leaves part of the colon intact. Stool leaves the body through the end of the large intestine.

     Later, the doctor closes the ostomy and connects the healthy portion of the intestine to the rectum or anus. Which is called the pull through (or they sometimes call it a BOWEL RESECTION), which is what Isaac had.  He had the pull through – which was one surgery. Even with the pull through there are many factors and techniques for that surgery. The surgical techniques are called the Swenson, Suave or Duhamal. Each of these operations has different versions. Which type is best for your child depends on their condition. Also there are different ways the surgery is performed.

• Minimally invasive procedure. The surgeon makes a few small cuts (incisions) in your child's belly. Then, they insert a thin, lighted tube with a camera and their surgical tools. This is sometimes called laparoscopic surgery.

• Open surgery: The surgeon uses a single cut to get to the intestines that need to be removed. The incision is usually larger than those used in minimally invasive surgery.

• Transanal pull-through: Sometimes the surgeon can reach the intestines through your child's anus. Then, they remove the unhealthy section and pull the remaining intestines down.

• Combination: In some cases, surgeons use laparoscopic or open techniques along with a transanal operation.

Isaac had the Swenson technique and it was done as a combination surgery. His surgeon made a small incision below his belly button, she pulled the intestine out, did a biopsy in the operating room to make sure the area she was connecting to had plenty of ganglion cells (which are the cells that are missing from the diseased portion of the colon), then she proceeded to perform the trans-anal pull through.

Now that I have covered some basics about the different types of Hirschsprung’s and surgeries they perform, I will now talk about the complications that kids can and DO experience. It really irks me that most of the informational stuff on the internet makes Hirschsprung’s seem manageable, easy to treat, and basically no lifelong complications. WRONG. SO WRONG.

One big complication that is on the forefront for many kids is Enterocolitis. Children who have Hirschsprung's disease are prone to a serious infection of the intestines called enterocolitis.

Enterocolitis is caused by stool backing up behind the immobile section of colon. The stagnant mass of stool provides a fertile environment for bacteria to grow. As the stool mass expands, it presses on the blood vessels in the walls of the colon. Decreased blood flow can lead to a breakdown of the lining of the colon (mucosa), making it susceptible to infection. It can be a life-threatening complication. It's treated in the hospital with colon cleaning (rectal irrigations) and antibiotics.

Isaac has never had enterocolitis (thank God) but I know MANY HD kids that have. It is really scary. Every time Isaac has a stomach bug, he has to go into the ER and is almost always admitted to be monitored to make sure it’s not enterocolitis. This infection can come on really fast and be very severe in a short amount of time. It usually begins with foul smelling diarrhea, loud audible stomach noises, lots of gas, abdominal distention, fever, possibly vomiting. HD kids can get dehydrated very easily and much quicker than a normal child would. So IV fluids are almost always a must, even when it is just a stomach bug. So simple childhood illnesses like gastroenteritis (stomach flu) and viral illnesses are taken very seriously with HD kids because those illnesses show the same symptoms of enterocolitis. That’s why Isaac has to go into his surgeon or the ER every single time he has a stomach illness. To rule out enterocolitis. This is why we are almost always admitted a couple times a year. This is why we were just in the hospital last week.

I also read on a website, this information.. I am absolutely IRATE with the first sentence... Most patients treated for Hirschsprung’s disease do not have complications. However, up to 10 percent may have constipation, and less than 1 percent may have fecal incontinence.⁶ Enterocolitis and colonic rupture are the most serious complications associated with the disease and are the most common causes of Hirschsprung’s-related mortality. Enterocolitis occurs in 17 to 50 percent of infants with Hirschsprung’s disease and most commonly is caused by intestinal obstruction and residual aganglionic bowel.^5,6 Infants should continue to be monitored closely for enterocolitis many years after corrective surgery because the infection has been reported to occur up to 10 years later. However, most postoperative enterocolitis cases occur within the first two years of ileoanal pull-through anastomosis.⁶

(Referenced from http://www.aafp.org/afp/2006/1015/p1319.html)

Are they serious? Most children do not have complications? Let me see, EVERY SINGLE HD kid I  know has had some complication. MY CHILD HAS. The information online makes it seem like this disease is so cut and dry. And there is no long-term side effects or issues. Most of the websites don’t even list anything more than Enterocolitis as a complication. Yet, there are many more things that HD kids can experience. More surgeries, bowel obstructions, kinks in the bowel or bowel rotations, malabsorption issues, weight gain or feeding issues, other GI issues like reflux, food allergies, dehydration, constipation, incontinence, I can’t even name all the things I have seen or heard about HD kids having issues with.

All the reading material online is passive. This is one site I visited it and this is what it shows are long-term lifestyle changes for managing the disease or what the general outlook is..

Children may experience constipation after surgery. To help manage constipation:  

• Serve high-fiber foods. If your child eats solid foods, include high-fiber foods as part of your child's diet. For instance, offer whole grains, such as whole-wheat bread. Reduce servings of refined grains, such as white bread. Encourage your child to eat fruits and vegetables. Cut down on fatty animal-source foods, such as meat and butter. Be aware, though, that a sudden increase in high-fiber foods can make constipation worse — so add high-fiber foods to your child's diet slowly. If your child isn't eating solid foods yet, ask the doctor about formulas that might help relieve constipation 

• Increase fluids. Encourage your child to drink more water. One of the colon's jobs is to absorb water from food in the last stages of digestion. If a portion of your child's colon was removed, your child may have trouble absorbing enough water. Drinking more water can help your child stay hydrated, which may help ease constipation.

• Encourage physical activity. Daily aerobic activity helps promote regular bowel movements.

• Ask your child's doctor about laxatives. Certain laxatives — medications to encourage bowel movements — might help relieve constipation. Ask the doctor about the risks and benefits of laxatives for your child.

SERIOUSLY?!? This is what you “need to do” to manage it. Managing constipation for an HD is not simple. These guidelines for managing constipation are for a child with a NORMAL COLON. Yes, these things are beneficial for an HD child, but not at all “the fix.” Children with HD have a colon that does not function normally. It never will. Even with surgery. There is something structurally wrong with their colon. This is why HD is a lifelong condition. The surgery works yes, but it does not cure Hirschsprung’s.  

Last year when Isaac turned 2, he started complaining about stomach pain. We took him into his surgeon who did some xrays and determined he was having issues with constipation. She suggested that we try dietary changes – adding in chia seeds, maybe some prune juice. Things like that. We then had a recheck in a month which determined those measures were still not helping. Still constipated. The issue with constipation is the longer it goes untreated, the more likely the colon will stop functioning properly. When you don’t have a system that is functioning properly, all kinds of other issues come up. One being, that if you let the issue go, the colon with basically will get lazy causing the colon to be stretched out. Obviously which makes it not work properly. It also puts the child at risk for another surgery. That’s when a mom friend of mine suggested we see a nutritional practitioner. I posted a blog about what we were trying and what we were doing under her care, which is located here: 

http://sweetbabyisaac.blogspot.com/2014/01/managing-hirschsprungs-disease_21.html

I won’t go into detail about it on this post since it was already a blog entry for us. The things we learned, and still learn, from here are so valuable. She told us that a strict NON GMO diet was in order because people with GI disorders, especially ones like HD, should not consume GMO’s. In case you are unfamiliar with GMO’s I suggest you read up on them on this website (http://www.nongmoproject.org). In short, GMO’s causes inflammation in the intestines and digestive tract. Can you see why it wouldn’t be good for HD kids?? She also really outlined a diet for us, what stuff to avoid, what stuff to stick to, and she also prescribed a lot of supplements to start to “heal” his gut. When we started working with her, our surgeon had put us on a low dose of senna. Which is a bowel stimulant. Not a laxative, a stimulant. This helps aid in the process of elimination (pooping) by basically stimulating your bowels or forcing them to empty. It wasn’t that his poop was hard, it was not moving through fast enough. We went back and forth on the dosage. Up down, up down. Sometimes it really upset his stomach. Lots of gas, lots of pain. That’s when we went to see Isaac’s GI dr. After speaking with him, he suggested we start seeking more alternative care, since that’s what we were now leaning towards. I would not accept that my son would need a bowel stimulant everyday just to poop. Especially one that hurt his stomach. But what do you do? Either him be in pain from not pooping or be in pain from the senna. And there was nothing more really the surgical team could do because there was nothing really structurally wrong, it was just his system not processing it fast enough. It needed stimulation. That’s when our GI suggested chiropractic care. Which I just wrote an entry about that as well. Which I won’t get into too much on this entry. You can read about it here: 

http://sweetbabyisaac.blogspot.com/2014/05/chiropractic-48.html

I wanted to point out that NONE of the alternative therapies are covered by insurance. His nutritional practitioner, his chiropractic care, none of that. That is all out of pocket expenses we pay for. I decided to not go back to work when we found out Isaac had Hirschsprung’s Disease. And let me tell you, I made the right choice. There were plenty of days, weeks, months that I had to administer treatments at home. Irrigations amongst other things. Doing this is very common for HD kids. We often have to do them when our kiddos get sick as well. And especially when they get enterocolitis. Some parents have to do them every day just to get their kids to poop. With that being said, a daycare would never be allowed (or even want to) perform these treatments. Isaac also struggled with food allergies until he was about 2 years old. HD kids really don’t just have Hirschsprung’s, they have a whole host of other issues too. So putting your child in daycare is not really something we can do. Some parents HAVE to, but I guarantee they don’t want to. HD kids need to be monitored. They need to be treated as an individual. We have to document what they eat, how much they drink, how much they are pooping.. What color the poop is, the consistency of the poop, does it smell funny, do it look funny, the list goes on and on. How are we supposed to put our kid under the care of someone else who has no experience with this disease??? It’s not as cut and dry as you think. Also, with the special diet, that means virtually no eating out. No garbage food. Isaac couldn't have dairy, soy, grains, gluten, nuts, or eggs until he was tested at the age of 2. His diet was so strict. And it still is.. We have to eat whole, organic foods. Which comes at a large cost. But I will do anything to help my son. ANYTHING.

Another issue is financial problems for HD families. Like our family, we live on one income. Isaac's dad works a lot. Sometimes his schedule is not accommodating to Isaac’s issues, but the company he works for has been such a blessing for us. They understand Isaac’s condition and always try to accommodate when they can. But most employers do not do this. What about the families that HAVE to go to work and cannot miss work or they will get fired?? The other day our insurance would not pay for a 29$ bill to the pharmacy for special spray and cream my son needs for his butt. 29$. They didn't want to pay for it because it is considered something the pharmacy can dispense over the counter. But you cannot go into a store and just buy it. You have to have a prescription for it. So how is that “over the counter?” We have tried every single over the counter, buy in the store diaper cream. HD kids don’t get a rash per say, the poop burns their butt. Basically a burn. They only thing that works for Isaac is to have this special cream and spray. Our surgeon used to supply it for us but they have cut back their expenses and cannot give it out anymore. So now we have to pay $14.50 for a 1 oz (ONE OUNCE) bottle of spray and $13.50 for a tube of barrier cream. We use about one per week. So we are looking at around 110$ a month. Do you know how long I spent on the phone on Monday with the insurance company? 2 hours. TWO hours to not get anything taken care of, to get a recording that said the phone lines are experiencing a high volume of calls and to call back later. After being transferred to 5 different places. To hear that recording. 2 hours. Do you know how long my fellow HD mom spent on the phone last week with insurance? 6 hours. SIX HOURS.  Who can have a full time job when you have to spend 6 hours on the phone with insurance? How can someone even take care of their child or children when they have to be on the phone for 6 hours. What about if their spouse works? Or what if they are a single parent?? Our system is so flawed. This is why I want to raise awareness for Hirschsprung’s. So they medical system, insurance, whoever else will recognize the struggles that families go through - not just HD families. On top of spending hours and hours on the phone a week with insurance or whatever, we also have doctor appointments. Sometimes multiple appointments a week. A mom I spoke with said her kiddo has 6 to 8 appointments a WEEK. A WEEK. That is like 2 or 3 a day. How can a parent of a medical complex kiddo have a job that would accommodate a schedule like that?? There is no point in working because you spend all day with doctors. What about all the other things life throws at you? Cleaning house, cooking, taking care of your other children. Or even remembering to eat or shower. This is why HD parents feel so alone. I admire HD parents (and other medically complex kiddos) because we ALWAYS put our kids first. We don’t worry about how the bills are going to get paid, or about when our house will be cleaned, or a shower. Or even thinking about the future. HD is a day to day illness. We fight every day for our kids. It’s so hard to be an advocate for your child when there is no one listening. No one there to help. Hirschsprung’s families feel alone a lot of the time because people generally don’t understand our struggles. Actually a lot of families feel alone when their kids have medical issues. Not just Hirschsprung’s families. But I want to raise awareness to increase the funding for research, to push our government to have better programs for families like mine. Hirschsprung’s is about 1 in every 5000 live births, that means there is about 40 families like mine living in Tacoma (give or take with a population of about 202,000), I need the help of all of you to link us all together so that we can tell our stories. I only know ONE family locally. I need to know EVERY family in Tacoma. Every family in Washington would be my goal. But without the help of all of my friends, family, strangers, I cannot fight this battle alone. I hope after reading this blog post you will decide to share my ILoveRare page one more time. And to encourage all your family, friends, strangers on your Facebook to do the same. I thank everyone who has already helped us. What you've done is invaluable to me. Here is the link to our Facebook page.. 

https://m.facebook.com/hirschsprungsstrong

Yesterday was another down day.. #47

Saturday around 3 am Isaac woke up and vomited all over our bed. We put him in the bath, washed him up, and snuggled on the couch for a little bit. He ended up throwing up once more before falling back to sleep. When he woke up he was acting totally fine. He insisted that dada and I get up right away so we could play. Throughout the day he seemed 100% normal. He ate fine, drank fine, played fine, nothing seemed out of the ordinary.

Around 3:30pm he started complaining about his stomach hurting. Then the diarrhea started. Red flag! So he asked to take a bath. We decided to call his surgeon and see if there was anything we should be watching for. You know that extra reassurance this was just a viral thing and it will pass as soon as it came on. By the time we hung up with the surgeon and got him out of the tub we could tell him upper abdomen was rock hard and he sort of had a lump on the upper left side. At this point I was really concerned. We called the surgeon back and he said to bring him in. Luckily, it was one of the surgeons who has treated Isaac before and we absolutely trust.

The ER doctor did an exam, we had an x-ray, and they started him on an IV. They also drew labs. One of the PA's from the surgical team came down to access Isaac herself. After reviewing the x-ray the surgeon came down. He said he was a little concerned. I hate hearing those words. But I kind of already knew that something was going on. He told us the x-ray was not good. He said it could be 1 of 3 things...

1. A large bowel obstruction (um what)

2. Enterocolitis (fabulous)

3. Colitis - like viral gastroenteritis

I was hoping it was number 3. Obviously. I knew that when I saw him that something was not good. Usually when surgery comes down it's like the oh sh@t factor. He told us he wanted to do his own exam and do an irrigation because that would tell him more about what this was. The irrigation went fine. He said he didn't feel any resistance while doing it which meant it was not an obstruction.  Hallelujah.  And since it wasn't explosive he was pretty sure it wasn't enterocolitis. Hallelujah x 2. He did want to admit us though for observation. And that would give them a chance to get the labs results back too. So we waited for our transport upstairs. Another hospital stay. The second one in less than 2 months.

We got up to our room around 9pm. I think. I can't even remember. The night was uneventful.  He got to eat. We watched cartoons and played with some toys. The labs came back normal. His inflammation marker was not elevated which confirmed he did not have enterocolitis. That pretty much left only one option.. Viral illness. Which was the best news. The only news I was willing to accept.

They woke up early this AM. Around 6am. The nurse told us we needed to get him to x-ray because the surgeon would be in the OR all day and wouldn't be able to read the x-ray until after 4pm and if it had improved he wanted to get us home asap.

The x-ray had improved drastically. The issues from not even 12 hrs prior had resolved. The surgeon came by and just did one last exam. And said we could go home.

Just another bump in this long road.. But hopeful of better days. ♡

Up down up down.. #45

January (my last update) and February seemed to be our sick months. Isaac had that viral thing that landed us in the hospital, then had a cold, then another cold with his first ear infection. Needless to say, we are looking forward to the summer. Hopefully all the sickies are behind us because I feel like we have been cooped up for weeks. I was down for a few days because I caught his cold. I haven't been sick in 5+ years!! Somehow daddy and I have managed to avoid all the colds and viruses. My first time being sick as a parent. Luckily I was only sick for 2 days.

We have continued to see Isaac's surgeon monthly to monitor his pooping. Things have been up and down, up and down. The x-rays have been all over the place.. good, not so good, ehh, lots of stool, ok, excellent, and anywhere in between. Largely in part because of him being sick on and off. It seems like whenever we get a good streak going he gets sick and then it messes everything up. We have had to hold the senna when he gets sick because it has caused some bouts of stomach upset. I didn't want to exasperate the issue with giving him senna on top of a sour stomach. We were having trouble getting him to drink the senna tea. It was getting hard to mix in with a smoothie because it would yield at least 8 oz mixed and trying to get a toddler to drink 8 oz in one sitting rarely happens. And that was causing some back up because he was not getting the full 3 oz dosing of the tea he needed. We decided about a month ago to start the senna medication. He only gets 2.5 ml's (1/2 teaspoon) a day. And it is such a minimal amount it does not throw off the taste of a smoothie or even a little juice. Makes it much easier to get him to drink. I can mix it in with 2 oz of a smoothie and he doesn't even notice. No more stressing about him drinking an 8 oz smoothie. He has tolerated it well. No complaints of stomach pain. Sometimes it can cause cramping for kids but he has seemed pretty solid on it. We haven't experienced any adverse issues. Which makes this easier. I was so concerned about giving him a daily "medication" but actually it has dimished my stress. I know he is pooping (a lot) and that's really what matters.

We continue to take him to the nutritional practitioner. He graduated off the 2 supplements she had him on before. Hooray!! They did their job and now at this point he doesn't need them. She did give us a new supplement called IBD Chord which I will talk about below. When he was in the hospital in January with a viral illness it caused some inflammation in his colon. This supplement helps decrease that and helps get things back to normal. She also had an alternative to using the senna medication which was an herbal supplement in capsule form. Which we were to open the capsule and mix it in with a drink or smoothie. I tried so many different things but because of it's strong herbal properties, I could not mask the taste. Isaac could taste it through anything and would not drink it.  Maybe if in the future he still needs help, we can revisit that option when he is older and understands. I will talk about it briefly below just in case it could help someone else.

I am hoping that the next x-ray will show progress. It is very stressful worrying about your child daily. I am really hoping for better days in the future. Right now we are just taking it day by day. I always remind myself this is just minor in reflection to what other families are dealing with. And for that, we are blessed.

Supplement info:

IBD Chord
IBD-Chord is a distinctive, complex blend of specific homeopathics combined to address the common causal factors behind Inflammatory Bowel Disease.

Colon Clear capsules
Colon Clear combines several wildcrafted botanicals traditionally known to alleviate bloating, pressure, occasional constipation, and overall support for normal bowel function.

It wouldn't be normal if we didn't have a hospital stay during this time of the year!!.. #44

I waited to post this until after I got my previous post up about how we are managing HD naturally. Last week Isaac had a short hospital admit. Blah. He was running a small fever last Sunday which went away within a few hours. But by Tuesday his stomach was making that awful grumble HD parents do not like. Then he was complaining about his stomach hurting. You could tell he was in pain. Soooo we packed up and went into the ER.

Earlier that day his surgeon saw him in the clinic and nothing showed up on xray. He had been complaining about his stomach briefly in the AM so I figured he should be looked at. Within a matter of hours the xray had drastically changed!! Happens super fast with HD kids. The xray they took in the ER showed he had inflammation in his colon. Not cool!!! The surgeon reviewed it and decided to admit us for observation.

We had to wait over 5 hrs in the ER room because the hospital was so busy. Luckily Isaac had fallen asleep so when IV therapy came by to put his IV in they had everything prepped and ready. Of course he woke up when they put the IV in. I was heartbroken for him but it was almost better he was asleep. Last time it took an hour to get a line in because he was so upset and fighting. There is nothing worse than watching your child in that state of pain and panic.

We stayed 2 nights. He was only on NPO for less than 12 hrs. NPO means he can't eat or drink. He slept mostly but I knew he wasn't feel too bad. Just didn't want to be there.

The diagnosis was viral. Nothing that held him down too long. Things are on the up and up. Glad we breezed by this one.

Super long update.. #40

It has been months since I have updated. The summer flew right by us! I didn't even update with pictures of Isaac's SECOND birthday. That will be in my next post. :) I feel like we have had so many appointments since I updated last, we added a new practitioner to Isaac's team - which I will touch on in the following paragraphs. We continue to see his GI and pediatric surgeon regularly. We have been seeing his surgeon more over the last couple months because Isaac started complaining that his tummy was hurting. This was in late October. So we decided to make an appointment with his surgeon to make sure nothing was going on. Well she saw a little more stool on his abdominal xray than she would of liked. She suggested doing some chia seeds daily to see if that would help move things along more. After a month of doing those we had a follow up appointment and within that time frame things did not change on his xray. So she suggested we add some Senna. I was so hesitant to start something like a stimulant laxative so I took the recommendation of few moms I know, and took him to see a holistic nutritional practitioner. She gave us 2 supplements to start with him but did tell us that we would need to do a round of them before we saw much of a difference.. Which would be between a month and a month and a half. So far we are 10 days in and I feel like I have seen some improvements. However, we had another follow up with Isaac's surgeon and the xray still showed his colon was full of stool. Right now we are at such a crossroads that we don't know what to do. We don't know if this is just normal toddler things, or if this is an issue arising from his Hirschsprung's. Our surgeon again recommended we tried the Senna for a short term. Hoping to get him cleaned out and reset his bowel.. And then hopefully be able to take him off of it. I placed a call into our new practitioner we are seeing, hoping to hear from her tomorrow before we go ahead on the Senna. It is so hard, I struggle everyday worrying about if I am making the right decision for my child. I worry about giving him Senna. I worry about not giving him Senna. And then him getting so backed up that his colon gets impacted or it causes some other issue. I want to get him bowel back working correctly but how do we do that? Will it be combination of a natural approach and the intense medical side approach? I believe you have to have a good balance of both worlds. I am hoping to get as much information as I can in the following days. But I can say one thing, I AM SO GLAD WE ARE NOT IN THE HOSPITAL THIS YEAR AROUND THIS TIME. Both years prior we were admitted into the hospital and spent 5 days there.. Barely getting out before Christmas.

We are expecting some snow tonight.. They said it would roll in about 12 midnight.. It's 12:48 so I better take a look to see if we have any yet. We didn't get any snow last year.. So this year better be good!!! This year we are all ready for Christmas. I am so happy! We got all our shopping and crafting done. I am having a date with on of my best friends on Saturday to run some last minute errands and pick up the last few small gifts. I am so excited to be able to enjoy the holidays this year.

 I am still stressed about what is going on with Isaac, but I feel like we have a huge network of people that will help get us over this. I just have to stay positive and always seek the best answer for my son. A lot of people don't understand what it's like being a parent of a HD child. If you read another HD blog, our stories are very similar, but some kids do have it harder. Each journey is different, but in the small scheme of things, it is all the same. I still have yet to meet another HD family on our area. Which makes it hard because no one really understands what we go through everyday. People don't understand why we have to eat a certain way, or why he can't have certain things - like juice or bananas. It is so tiresome trying to explain over and over and over again why we can't do this or do that, or can't eat that or eat this. Or why we label read. Or why we only eat organic. People just think it's an easy fix. Hirschsprung's is a LIFE LONG condition. Just because he had surgery does not mean his condition is fixed or cured. So sometimes I feel like we are alone in this. I just wish for once I could sit down with a mom of an HD child and talk over food. It really is lonely out here.. I would also like Isaac to have some HD friends. So he can relate to someone when he is old enough to understand. Sure it's hard going to parties or eat out of our home when other kids or adults are eating things he can't. That's why we hardly go out to dinner or eat at others houses. I take him to a tot class during the week and they do a snack. They give apple juice to the kids, and my kid is the kid who gets water. I hate having to bring his water out and him see look at the other kids and then look at me like why can't I have juice. We do some juice occasionally at home, but definitely not apple juice. That really upsets his stomach. I am already thinking about when he is older about how people will interpret his condition and react to it. I don't want his dietary restrictions to make him an outcast. If that makes sense? I already hear crap from my own family members about his diet, what will non family members say? Maybe I am over thinking it.. I don't know. We have also made some other dietary adjustments after seeing the nutritional practitioner which includes NO GMO's, no high fructose corn syrup, or any yellow corn products. All these things can cause a disruption and inflammation in his gut.

On another note, our Seahawks are doing amazing!!! I am positive we will be heading to the super bowl. We love watching the games every week. And Isaac is a huge fan already. His entire room is done in the Seahawks. We have even taken him to a few autograph signings and he loved it. Needless to say, he asked for a helmet and jersey for Christmas. :) And all he wants to wear is Seahawks gear. His favorite players are Russell Wilson and Richard Sherman. So proud!! We are big football fans in our house.

Last year Santa didn't go over too well, so this year I figured it would not be any better. But boy did he surprise me!!! He talked to Santa, sat on his lap, and told him what he wanted (a seahawks helmet and jersey) and then gave him a high five. I still had to be in the picture, just within arms reach. I was so proud of him. We should be getting the pictures soon, so I will post then.

So all in all, I think things are going well for the most part. I will be updating in the next couple days on the situation that is going on. I hope to have some answers soon. In case I don't make it on before Christmas, MERRY CHRISTMAS!!! Thank you all for following Isaac's journey.

Hospital update.. #33

We got discharged today around noon.. So glad it was just a 2 day stay. They think he just has a little tummy bug. They are treating him for enterocolitis, which they know he doesn't have, to be safe because sometimes when HD kids gets tummy bugs it causes their bacteria in the colon to get a little whacky. Then enterocolitis comes in.. We just had IV fluids and antibiotics while we were there. Everything looked good. We see the surgeon after Christmas for a follow up.

:) Thanks everyone for thinking about Isaac..

Hospital stay! Bummer!.. #32

Well Sunday - the 16th - Isaac didn't eat very much all day, was pretty gassy, had loud tummy grumbles and then in the evening had a touch of diarrhea. We decided to bring him in to the ER to see what was going on in fears of enterocolitis. Which in the HD world is scary and serious.

They gave him an abdominal X-ray and it wasn't quiet right - lots of gas. So the surgeon decided to keep us for observation and for some IV fluids and antibiotics. Had some tests ran and everything came back normal. Good news!!! Bad news is it took them 2 hours to get an IV in. And it was a miserable time. We had to hold him down and he was just crying and crying. I felt so terrible. Broke my heart.

Monday morning he had another X-ray and the X-ray was normal... Everything had resolved. So they decided to allow him back to his normal diet and stay one extra night. And Monday was pretty uneventful. We rode around our floor on a red wagon. Which Isaac loved. He still remained his happy self the entire time. Minus the IV issue.

Thinking we get to go home today.. Hoping!!!! And is it ironic that one year exactly, December 17th, we were here in this exact same spot? Yes.. 2 years in a row on the same day we got admitted to the hospital. This better not happen again next year! :)

Another big day.. #14

January 9th, 2012 - Exam under anesthesia day. I barely slept the night before. Actually we only slept 30 minutes. Partially from nerves and partially because Isaac was ANGRY he couldn't eat past 1am. He was up and down most of the night. I almost broke down and fed him. He was so upset. This got me thinking again and asking God why did this happen to us? Why my baby? When would this hardship end? But then instead of asking why, I asked God to comfort my baby and protect him. After we got Isaac to sleep we tried to catch a little snooze, well a 30 minute cat nap.

We arrived at the hospital at 7am. Did all the standard "surgery" type stuff. Checked in. Got admitted. Got to our pre-op room. The nurse spent at least 45 minutes going through information and vitals and all that required stuff. Then we waited for the anesthesiologist to come by and talk to us. When he did come by he was very brief and very nice. We seemed like old pros at this. We really didn't have any questions. Just basically like that last time.

When our surgeon came by she answered any questions we had. I always felt more comfortable asking her questions. She is not only an amazing surgeon but a mom as well so she knows how I am feeling. I started crying, like usual. She told me he would be ok and she wouldn't let anything happen to him. She always knew how to comfort me. She told me I had to stop crying or she was going to cry. LOL. I was a hot mess!!!

When the nurse came by to take him to the OR, it was Shannon from his first big surgery. She was one of the OR nurses. And she remembered us! I instantly felt a little better. Isaac had a team that knew him and that made me feel better. We gave Isaac all the kisses and hugs we could. I told him I would be waiting for him with a bottle when he was done. I felt so bad, again. Like I did before his first surgery. He was older now. He knew a little more about what was going on. And some strange lady was going to take him away. I really hoped he wouldn't be scared. I have never left him since the day he was born. I felt so terrible. Shannon picked him up and carried him off to the OR. We knew the routine. Go upstairs to surgery waiting and WAIT.

We checked in upstairs at the desk. Walked over to our table we had sat at during his first surgery. We waited for our surgeons name to come up on the screen to see the progress. It flashed from in progress to done really fast. We kinda of looked at each other like what the heck is going on?? Was it like that because something happened? Or did it show that because it wasn't an actual surgery? We were so confused! Then the phone rang and one of the desk ladies came over and said they were finished and the surgeon would be up to talk to us. She escorted us to a room and we waited. We were really nervous because it was literally not even 10 minutes from when they took him away.

When she came in she told us that it was a 5 minute from start to finish procedure. FAST! She said that the area looked wonderful and she had no concerns after seeing it. She said that the inflammation was probably from his allergy and also from the surgery. She said it is pretty common for some swelling and inflammation to linger for awhile after surgery and that the allergy probably just irritated it even more. SUCCESS! His initial surgery worked! Nothing was wrong. No more surgeries at this point. Now I just wanted to get to my baby.

Our surgeon walked us down to the recovery room. Isaac was crying his head off. He was so hungry and so out of it. But they told us it should wear off within minutes because he was only under for less than 5 minutes. So he had barely any anesthetic. We fed him. Got him dressed and the discharged us within 10 minutes. We left the hospital around 10am. His procedure was at 9. The pre-op stuff took longer than the surgery and recovery! We couldn't get out of there fast enough!!

We were so happy that we could finally put this part of the journey behind us.. And hopefully wouldn't be back at the hospital any time soon. We just wanted some normalcy in our lives.. 

Good & Bad news.. #13

January 3rd, 2012 - Today Isaac had his barium xray done. Which is a contrast xray, similar to a CT scan. The xray shows the large intestine, the colon and rectum. He had one when he was first diagnosed in the NICU. And it was absolute HELL. They have to strap him down to a board with his arms above his head.. He screamed the whole entire time. It was so hard for me to watch or listen to. I stood right next to him even though there was nothing I could do to calm him. The surgeon ordered this procedure so she could see why they were seeing inflammation and a stricture in the area where he had his surgery.  They wanted to see if the the inflammation had decreased since he was released from the hospital a couple weeks ago. They didn't know if there was a kink or twist in the bowel or if there was some abnormality from the surgery so she wanted to make sure the inflammation was allergy related.

It took about 30 minutes. As soon as they were done taking the pictures we unstrapped him and picked him up. He was so upset. He was like hyperventilating almost. I was so upset I was crying myself. You know when you cry so hard you start doing involuntary sniffing and whimpering. Well he did that for about 20 minutes. It broke my heart! After the radiologist reviews the films, we packed up and headed across the street to his surgeons office. Luckily we had an appointment with her an hour after his procedure so we would know the results right away. I hated waiting. And I think she knew that. So she scheduled us to see her right after.

We waited in the room for the doctor to come in. I was pacing the floor. The rooms are incredibly tiny so I pretty much did 2 steps and then turn, did 2 steps, and kept repeating that over and over. My heart was pounding, my hands were sweaty, and I was shaky. When the door opened I wanted to just open my mouth and start asking questions. But I sat down and tried to remain calm so I could  understand what she was saying.

Good news or bad news first, she asked. My heart sank. Bad news? There's bad news? She told us the good news was he did not have any abnormalities from the surgery or any other serious complications, BUT the area she was concerned about was still a little narrower than her liking. So what did that mean? She said that she wanted to go in with a little scope and take a look at the area to make sure no scar tissue was forming causing the stricture or that there was not a pocket of infection that can sometimes form. Sometimes scar tissue can form which requires a cosmetic type surgery to fix. She said she also felt better that she would know exactly what was going on. So she wanted to do an exam under anesthesia next Monday the 9th. It was like a day surgery. But he did have to be put under anesthesia.. Again?

So I guess all in all, it came out in a way we were hoping for. Nothing too serious was going on and after next week we know for SURE what we were dealing with. Until then, be nervous as HELL.

Here we go again.. #11

I was hoping that our surgeon would be on call this weekend or the other surgeon that had discharged Isaac from the NICU. Jose actually picked up the phone and then looked at me and said it was our surgeon. I was so relieved. But when I got on the phone she told me who she was. Not our surgeon. :( I explained to her what was going on and she asked me a bunch of other questions. Did he have fever? No. Was he refusing to eat? No. Was he acting sick? No. Was his stomach distended? No. Did the diarrhea have a foul smell? No. Was he vomiting? No. She told me I could either wait awhile to see if this was just an isolated incident or I could head into the ER. It was my call. She said that because he had no other symptoms that it didn't sound emergent but she said it was up to me if I wanted to come in. I just felt in the pit of my stomach that something wasn't right but then again he had NO other symptoms of enterocolitis. But like all the horror stories I have read about your child can go from having one little symptom to being very ill very quickly. So I decided that we should probably take him in. Jose had to work that night like every Saturday night and by getting him checked out meant that I could come home and not worry about it. So we decided to pack up and head out..

When we got to the ER they assessed him. Basically the usual head to toe normal baby work up. They said he looked good and it was probably just an isolated incident. But I asked if the surgeon was going to come down and look him over.. Which is STANDARD Hirschsprung's baby procedure. And the ER doctor said no that they felt he was fine and they didn't need to contact the surgeon. They didn't even do an abdominal xray.. Which is also STANDARD procedure for Hirschsprung's babies. Well we insisted that they contact the surgeon because we had spoken to her and we would feel better if we could just get a quick word in with her about how she wanted to handle his care for the weekend. So the ER doctor contacted her. They came back in and said the surgeon wanted to get the abdominal xrays. Well duh people we had been saying that the whole time. So off to xray he went..

They ER doctor didn't even come back in.. The surgeon did. I asked her immediately if he was ok.. And she paused and said.. "The xray is VERY concerning." My stomach immediately dropped. My mind started racing and I burst into tears. I had no idea what that meant.. But from the look on her face I knew it wasn't good news. She told us she was going to pull up the xray to show us what was going on. This was the second time in my life I had been this scared. The first being, well obviously, when he was diagnosed.

She showed us on the xray how backed up with gas he was. His tummy was very distended internally but externally it was not very well pronounced. She said in the area where he had the surgery there was a narrowing. And she did not know why it was like that but there was definitely a "stricture" there. There was also talk of intussusception and a blockage. She said that she was going to examine him and do a catheter in his bottom to release all the air that was built up in there because it could not get out. I was panicking thinking that his surgery didn't work and we were back at square one. When we lifted up his shirt she saw the rash that numerous pediatricians had seen at his regular doctors office and asked how long it had been there. I said well kinda on and off for 2 weeks and then explained how 3 different doctors saw it and said it wasn't a big deal. She immediately said, that is a milk protein/soy allergy or another allergy and that's what could be causing all the rest of his symptoms. Um like gas, spitting up, distension, explosive diarrhea, and cause a stricture to form because allergies inflame the intestines. All those trips into his pediatrician and me knowing something was not right and they keeping telling me everything was normal, well look here buddy, I was RIGHT! I was so furious. How long had by baby been suffering??? Seriously. And the ER was about to send us home and we would have went home if we hadn't requested the surgeon to come down. This is why so many things go undiagnosed.. I have read SO many stories of other families STILL chasing answers for their babies. STILL fighting issues and illnesses because to doctors, they are just another kid. Everything falls into the "normal" category. My If you can't trust an EMERGENCY ROOM, who the hell can you trust? I'm glad I am the persistent mom that kept pushing. I will not take no for an answer. Just as I thought this would be a case solved and we would be given at home instructions, she dropped the bomb. He was being admitted. He needed further testing, time to clear out his system and she wanted to monitor him at least until Monday when our surgeon was back in the office so she could decide what she wanted to do. I was terrified.

The whole time this is going on, Isaac is happy as a clam. When we wheeled him up on a big huge bed to the pediatrics floor, he thought that was the coolest thing. Ha. I didn't. But I knew he was in the right place and he was going to get taken care of.

Nothing really happened over the weekend. He had a few more xrays that showed the gas was clear and things were looking better. The stricture was still there and could take at least 2 weeks to improve because of the inflammation. His intestines needed time to recover. He was on bowel rest for 24 hours which meant he couldn't eat anything. He was NOT happy about that. And we were waiting for a GI consult on Monday so we could really confirm this is what was going on. All his labs had come back fine, no infections or anything. Thank GOD! So pretty much hung out until Monday when his surgeon and his new GI doctor would come by to let us know what the plan would be.

On Monday, which was December 19th (ya so close to Christmas) our surgeon and GI told us that this was indeed an allergy but also intusseption was not ruled out and that they wanted to monitor him one more night and if things went ok, we could go home tomorrow. And upon discharge we would be given instructions for at home care. Our surgeon also wanted to do a barium xray which is what he had in the NICU so that she could get a better look at what was going on. She wanted to rule out any kinks or twists in the bowel, which she said can happen from surgery. Or if there was scar tissue that was forming. Or any other abnormality. But that wouldn't be for 2 weeks after the bowel had time to rest and some of the inflammation went down. How could I wait 2 weeks to find out if my baby was ok? Another wait and see thing.. But in the meantime,  Isaac was taking to his new formula.. Which I was happy about.

Tuesday the 20th we were released. We had to do at home irrigations which was a saline rinse on his bowels with a catheter. Not fun. But these help keep his system clear and reduces the risk of enterocolitis. So we had to learn how to do these. And we had to do them 2 times a day. We had a follow up appointment set with our surgeon and GI.. Now we basically had to wait for the contrast xray to really know if anything was going on. This was definitely weighing on my mind..

Normal or Not?.. #10

Isaac did really well for the first few months he was home. We had no issues or have anything pop up in regards to the Hirschsprung's. We learned so much about what to look for and also A LOT about a new baby!! You don't know ANYTHING until you have a baby. It was really hard to decipher if things were "normal" baby stuff or something to do with the Hirschsprung's. As soon as we got into a routine, he would switch it up on us again. Isaac has always been a good baby. Never been fussy; always smiling.

I started to notice a little bit of what I thought was reflux. Spitting up, gassy, congested all the time. I decided to bring him into the pediatrician to have him checked out. They gave us a prescription for Zantac and basically sent us on our way. I respect all doctors but seriously if another pediatrician tells me "it's normal" I will blow up. The reason I am saying this is because I brought Isaac to the doctor numerous times because of his gas and spitting up. And also other things related to his tummy that I just didn't feel right about. And I was told every time it was "normal." One day I just felt deep down inside that something was not right with him. He had been straining really hard, turning bright red, and grunting A LOT. And then a boom in his diaper. Hirschsprung kids can get an infection called enterocolitis which if left untreated can be VERY life threatening. Kids that get enterocolitis get constipated before hand and then the back up stool causes bacteria to over grow, causing this terrible infection. It can also come on very fast and furious. We were given strict guidelines to follow and what to look for in regards to enterocolitis. When we went to change his diaper he literally was straining so hard and then it happened... Explosive diarrhea that literally launched about 3 feet on to the wall. THIS was one of the signs of enterocolitis. Explosive diarrhea.  At this point I was sure something was going on.. And it was BAD.

I immediately picked up my phone and dialed the on call pediatric surgeon. It was a Saturday and why does crap always go down on the weekends! I knew we would be heading into the ER.. Luckily we were given "in case" instructions beforehand so we knew what we needed to do. We were instructed to call the on call pager and speak with the surgeon on call to let them know what was going on so they could let the ER know we were on our way.. That way the surgeon could tell them exactly what tests they needed to run and then they would be down to check Isaac out. I kept telling myself I was just over reacting.. The phone rang about 2 minutes after I had dialed in our number and pressed pound.. The surgeon was calling back..