Thursday, August 28, 2014

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


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: 


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: 


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. My fiancé 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?? Even though my fiancé and I are not married,  and I do not work because of Isaac’s medical condition, we do not qualify for ANY type of assistance. NONE. Isaac did qualify for SSI for less than a year.. Which they were giving us 50$ a month. 50$ a week is what we spend in diapers and wipes. I am not saying that we need assistance, but just 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. SSI decided that because Isaac’s dad (my fiancé) makes “too much”, Isaac does not qualify for any assistance. How does that even name sense? They want us be considered dependents when it comes to any type of state help but then when we apply for SSI my fiancé is condsidered single with no dependents so he makes too much for Isaac to get SSI. That doesn't even make sense. 

My fiancé got a promotion at work, where he has worked for 8 years. Of course he would want to take a promotion. But the increase in pay was not much. Maybe an extra week in groceries for us. Or maybe would pay our car insurance. Or something like that. So they decided to stop giving us the 50$ a month for Isaac. It frustrates me, not because we need the money desperately, but because I see people (and know people) who receive over $3000 a month from SSI and they don’t even have half the struggle Isaac does. I don’t understand how the SSI process works because I have a friend with a medically complex kiddo who does not get any assistance because SSI doesn't think her child is ill. He has a rare disorder that there are only a handful of cases here in the US. She has traveled out of state many times to seek other care for her child, and now just receiving more bad news and has to take him to another specialist. On top of him having this disorder, a heart condition, has now added neurological issues. She has applied for SSI for her son but keeps getting declined. It is such a process for ANYONE seeking any type of assistance but for people who really, really need it, there is no help. NONE. 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. You know how many times my fiancé and I have been out together on a date in 3 years. 3 times. 3 times. 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.. 













Friday, August 22, 2014

ILoveRare.. #50

The other day I posted this status to my Facebook...

With all this ALS stuff going on, makes me want to start raising awareness for other rare diseases that no one knows about. How about Hirschsprung's Disease. That's what my son has. And it virtually gets no funding for research, no shout outs, no challenges, no news time, no media time, nothing. Nothing. Yet these kids are just as strong, endure just as much - maybe more - than any other person fighting any other disease. As do their parents. So who will repost this to honor my son? Or post a sign for him saying Way To Go Buddy, you survived your surgery at 6 days old. Or donate money to fund Hirschsprung's research? No one cares because it's rare and not that important because it's not an "epidemic." Help me raise awareness for Hirschsprung's Disease. Share my status.

With this picture of Isaac. I asked all my friends to share my status and to keep sharing it. I got such a huge response, emails, messages, calls about what we could do to raise awareness. I have so many people willing to put in the work to raise awareness, start a non profit organization,  start challenges like the one currently circulating for ALS. With that, I created this Facebook page to raise awareness for Hirschsprung's Disease.  And a lot of other rare diseases that do not get ANY media coverage.

Pop over and like our page and share it far and wide!!! This is just the beginning people.. Lots more to come. Here is the link to our Facebook page.. 




Friday, August 15, 2014

End of summer check in.. #49

The summer has been great to us. We have spent a lot of time swimming and doing yard work in our yard. After starting chiropractic care for Isaac things did 180 degree turn. For the better. He now has normal bowel habits. He is completely off the senna and we are seeing his surgeon every 3 months instead of multiple times a month or monthly. We made it over that hump! I believe whole heartedly chiropractic care was the missing piece to our puzzle. Another great doctor to add to our team.

In February we are going to Disneyland!! 15 of us. My side of the family has planned a big family vacation and we couldn't be more excited. This will be our first big family vacation. Planning for that has already started. It is leaving me so excited but so anxious because February in the past has been a bad month for us. Just with all the viruses going around. We spent a few days in the hospital last February with a stomach virus. Really hoping we can be 100% healthy so we can enjoy our vacation. But we will probably have to talk to our surgeon about worst case scenario options for when we are in California. It's really hard being a parent with a special medical needs child sometimes because you always have to plan and think worse case scenario. Which means I will need to get hospital names and drs there. In case we have an issue arise. It has limited us as far as going on vacations because I guess we have always been worried about the what if. Which is not good. I really hope we can stay healthy and go enjoy this vacation :)

I just wanted to give a brief update and let everyone know we are doing well!! I hope to write again soon.. Before Isaac's 3rd birthday. Yep, he will be THREE.. 3.. THREE in 2 short months. Where has the time gone?!? I can't believe my baby will be 3.

Wednesday, May 28, 2014

CHIROPRACTIC!!.. #48

Please forgive me! I have been so sidetracked the last couple days, err weeks, that I have not had time to even update. I have been vaguely talking about how we started Isaac on chiropractic care and I have been getting floods of messages and emails about it. I think it's important, especially with special needs medical kiddos, to seek out ANY alternative (dont know why it is called alternative medicine because this is our choice in medicine) therapies you can. With that said, each child is not the same so results will vary. Hirschsprung's is a very tricky disease and there are so many ups and downs. Trials and errors.

So we saw our GI dr back in March that suggested we try some alternative therapies with Isaac. Chiropractic care was one he had mentioned. I had thought about chiro care in the past but with everything going on I just never got around to taking Isaac in. Boy do I wish I would of done so sooner.

In my previous posts lately I had been talking about bringing Isaac to a nutritional practitioner, trying senna on and off, a lot of ups and down. We have been battling getting him regular for almost 7 months. Since October. It has been really stressful. So I figured, you know what, why not. Why not try chiro and see what happens. 

Fast forward to about 5 weeks of chiropractic care. We saw Isaac's surgeon on May 8th and for the first time in 6 months she was shocked. Shocked that he was completely clear. Empty. No stool at all. She even joked she could feel his kidney he was so clear. This was the first time in at least 12 visits she had said even something remotely close to this. About a week prior to that appt we had taken Isaac off his prescribed senna dose because it was causing a bunch of adverse reactions for him. Lots of gas, stomach pains, diarrhea. At this point I felt like it was just too much for him. So telling his surgeon what had been going on we felt at this time he should be taken off the senna. His bowel was now functioning normally. I believe the chiropractic care was the missing piece to this puzzle for my son. Chiropractic care is not just about back or neck pain, it's about allowing your body to function and heal properly through these adjustments. This essentially allowed his bowel to "wake up."
 
I am very much a science based person. So there is not question in my mind that this is not a coincidence. We finally found a combination of things that are working for our son that does not include medications or some type of medical intervention.

We take Isaac to an awesome, well known, chiropractor here in the Tacoma area. Dr. Mike Long at Renaissance Chiropractic Center. Dr. Mike is so amazing with kids. This is by far Isaac's favorite dr to visit.

I know a lot of parents question alternative care because they just don't know much about it or they are afraid they can't afford it. Chiropractic care for children is so inexpensive. So inexpensive. And so so beneficial! Isaac has been doing very well with it and only goes about once every 2 weeks.
It has been such a huge relief to not have to give him senna everyday. Or do rectal irrigations. Or some type of medical intervention just to get him to poop. It made me cringe every time I had to give senna to him. Not knowing if it would upset his stomach and cause him pain. Things really did a 180 degree turn in such a short amount of time for him. I hope it continues to look up.

Here are some pictures from one of his appointments with Dr. Mike!! And for more information about Renaissance Chiropractic Center here is their link to their website..
 
 

Sunday, March 16, 2014

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. ♡

Friday, March 7, 2014

He is my superhero.. #46

It takes a brave child to fight Hirschsprung's Disease.. Or any chronic, lifelong disease. Cancer. Autoimmune diseases. Crohn's. Cystic Fibrosis. Congenital Heart Defects. Any of them.
He is my superhero.. ♡ I love you Sweet Baby Isaac.

Wednesday, March 5, 2014

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.