Wednesday, July 15, 2015

Barium Enema results.. #67

On Monday July 13th Isaac had his barium enema procedure. Those are never fun but it went way better than the first 2 he had when he was a baby. He was able to understand what was going on this time. Which made a world of difference. There were barely any tears and definitely no red face hyperventilating crying going on. The actual procedure is very quick. It takes longer to set up than it does to take the images. We had the same Radiologist Assistant that has done both of the prior ones. So helpful. He knew our son and we knew him, trusted him, so that put us more at ease.

Short and sweet.. We got the results within 24 hours and..


Such a huge relief for us.

Sunday, July 12, 2015

Hirschsprung's Disease and a Barium Enema.. #66

We had a follow up with our GI doctor on Thursday the 9th and it didn't go as planned. Back in April/May when Isaac was having issues, which included 2 hospital stays, one of the surgeons on our team suggested we redo a barium enema. He has done well overall but there have been some things and symptoms that we have not been able to pinpoint why they happen or for what reason. He has had 2 Barium Enema's before. One was when he was 2 days old, which they used to diagnose him, and they other was when he was about 3 months old. Both of which I talked about in my prior blog posts. 

A Barium Enema is a contrast dye study to show the full spectrum of the colon (large intestine). They give him an enema with water soluible dye in it which highlights the entire colon and then they take pictures of it. The solution basically dilates or inflates the colon so any abnormalities can be seen. The whole process takes about an hour. They also see how fast he passes the solution out. That will also tell us a lot about his evacuation process. 

Both BE's (Barium Enema) were not fun AT ALL. He was also very young and not able to understand what was going on. I am hoping and praying since he is older, it will go smoother. They both were a complete nightmare. Lots of screaming, red face crying, plus hyperventilating. 

In the appointment with his GI doctor we were discussing potty training. Which we started with Isaac recently. He is going on his own, at least twice a day, and has all the normal habits in a kid without Hirschsprung's. He can feel when he needs to go, etc which is really, really good news. On the flip side and the reason for the repeat BE, is sometimes Isaac's stool looks like a ribbon. So when I told our GI this, he consulted with our surgeon right away. They share a clinic so it's really convenient. I guess ribbon like stool can mean there could be a narrowing somewhere in his colon, amongst other things. Not good. The BE is to rule out any structural abnormalities in his colon. His primary surgeon felt a couple months ago when the other surgeon ordered the BE that it was not warranted at that point. Mainly because he already had a repeat BE (yes 3 years ago but results were normal) and all the other dozens of xrays and procedures have shown nothing. But I guess now that I am able to see the way his stool looks in the toilet vs a diaper, ribbon like stool is never good. Super disappointing and scary. I'm not sure what the outcome will be. He could have a narrowing in there somewhere which could be treated a number of ways.. Trying to stretch it under anesthesia,  doing botox to relax the area, even the possibility of another or redo surgery to correct it. All those outcomes mean more things Isaac will have to go through. 

Obviously we are hoping for a normal result. But the fear of the unknown is really really scary. I am glad we are moving on with this test so we can know for sure one way or another. But I hate having to put him through another traumatic experience. He has done really well so I am confident if anything is wrong, it will be an easy issue to address. I hope. And I pray for.
His test is scheduled for tomorrow, Monday July 13th at 9am. Please join us in saying a prayer or offering some kind of well wish to him. Thank you all!

Wednesday, June 10, 2015

Pictures from our 2 hospital admits... #65

Just some pics from our hospital admits from April - May 2015.. 

Lots of updates.. #64

I really haven't had the time to update from April until now. A lot has happened! Isaac had 2 hospital admits. One was for a possible infection (enterocolitis) due to a rectal impaction. But it ended up not being that! Thank God. It was a viral illness but he did also have an impaction. We battled constipation pretty badly for about 5 weeks. We had many, many visits to the surgeons office as well. Almost every other day it seemed like. 

At one point, we had to bring senna and enemas on board to keep things moving along. Then I just felt like that was also bringing unwanted side effects like lots of stomach aches, cramps, misery. Our GI doctor had recommended a naturopath to us quite a few months ago and I finally decided to call and make the appointment. I mean afterall, what else could I do? It was definitely better than to keep him on the current regimen that was miserable for him.

We had a great appointment with the naturopath. He recommended some different supplements to try to rebuild the gut flora and to get things working properly. We have him on 2 different probiotics, L-Glutamine, and a FOS to feed the good bacteria. I will post the pictures of the supplements for visual aid and talk more about them in another post. 

After about a couple days on the supps Isaac did a complete turn around. In a good way! Things became more regular for him. We have since weaned off the senna and not needed any harsh medical interventions. Which is a plus. The naturopath also recommended a no dairy diet. Which has been a little bit of an adjustment. But we already had been doing limited dairy. There are plenty of options for dairy free. Lots of yummy vegan cakes and cookies. I can't even tell the difference! And either can Isaac. Which is always a plus. 

Summer has snuck up on us. We had to move unexpectedly because the house we were in, the owner decided to sell it. Which was a big bummer and has been adjustment for us because we downsized. We will be looking to buy a home in about 6 or so months. For now, I don't have to worry about mowing or maintaining a lawn ;) We also have a swimming pool and playground literally within steps of our door. It has been a busy time for us. 

Hope everyone is doing well! 

Friday, March 27, 2015

One Year.. #63

March 16th marked a year since Isaac had a hospital admittance. ONE YEAR. We have managed to stay out of the hospital for one year. I can't say it enough. He has had some ups and downs this past year but it hasn't been serious enough to warrant a hospital stay. 

In fact, we just saw our surgeon 3 days ago and all was well on the exam. She told us after Isaac had his surgery that as he got older things would get easier. You just can never be sure with Hirschsprung's Disease so you learn to not count on certain things. But I do have hope. Especially with how well he has done recently. 

Today I took him for a Birthday Cake Frappuccino from Starbucks to celebrate. His first drink like this ever ;) 

Friday, February 27, 2015

Rare Disease Day is February 28th.. #62

Rare Disease Day is February 28th.. SHOW YOUR SUPPORT!

Hydrogen breath test results.. #61

The hydrogen breath test is a test for bacterial overgrowth, or intolerances to lactose, fructose, or sucrose. He tested negative for the malabsorption portions but he did test positive for small intestinal bacterial overgrowth or SIBO for short. Issues with breaking down foods (malabsorption) can cause SIBO but because he doesn't not have an issue with that, his Dr thinks it's because of the structural abnormalities of his colon and small intestine. He has motility issues obviously because of his Hirschsprung's.. So the small intestinal waves as they call (waves of bowel wall muscular activity) them don't function properly which causes the bacteria to overgrow. Kids with Hirschsprung's are prone to slow motility and it is causing his small intestine to not function properly. We aren't sure if this will be a reoccuring situation, it may very well be. We don't know how long this has been a problem because we just started noticing the symptoms after he was sick at Christmas. But looking back we think this is what was causing his issues on and off all summer which subsequently lead to his sedated procedures back in October. That testing would of not caught this as all we were looking at was his large intestine. Right now we are treating with antibiotics (yuck) and then will work to restore the good bacteria. We will also do certain small diet restrictions to keep it under control. We may take him to naturopathic dr, who specializes in SIBO, in Oregon. We haven't really gotten that far yet.