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.