The aftermath

The reason I am posting all of this is just in case there is another mother of a child with short bowel syndrome experiencing gastroenteritis, post infectious diarrhea, dehydration and is frantically googling all of those terms together. Hopefully she will end up here and find a few resources. Anyway....

I was holding off on updating. Kind of waiting for some great news. I really thought he would miraculously pull through the GI bug kind of like he's miraculously pulled through many other obstacles in the past. But this was rough. Rough, Rough, Rough. For all of us.

My initial post was on a Monday night. When Ryan woke up on Tuesday he was just barely himself. He wouldn't let me put him down. He took sips of water on and off all day and I held him in my arms for the entire day. He got a fever up to 102 (Just like Nora had the 2 days before) and he did ask for banana and attempted to perk up once or twice but was just so weak. He wouldn't hold his head up or even sit up. Thankfully, the vomiting had stopped. Caitlin reminded me that I should be thankful for the opportunity to hold my usually-busy little boy all day. I guess that was the silver lining. We started giving pedialyte through his gtube as we had been instructed by his GI doc. The diarrhea set in. nuff said.

Wednesday I went to work and John stayed home. I checked in throughout the day and Ryan was eating a bit of crackers and taking sips of water. But he was still VERY lethargic. I got a call at 3pm at work and John said he was genuinely worried about Ryan not being very responsive. I asked if he thought I could finish the workday. He said no--so I knew he was truly worried. I tied up some things and left without too much delay and went straight home, grabbed Ryan and left for the ER.

Long story short, he was not severely dehydrated, but was a bit dehydrated. And he was VERY cranky. The ER doc says "I don't want you to leave here until he starts to act happy." Yeah, right, it's well past bedtime and he has diarrhea, a diaper rash and a fever. They helped us with a new plan for administering pedialyte in a nearly continuous fashion rather than a bunch at once each hour. At about 10:30pm Ryan started organizing the little 2 oz bottles of pedialyte and the doc happened to notice and said she felt comfortable with us going home. Exhale. No iv's, so that was really a miracle. We had some dear friends praying through that piece and I truly felt that unexpected peace that surpasses all understanding. Thanks, God.

AFter a bumpy couple more days, Ryan's appetite picked way up and he got happier. The pooping slowed down though the watery diarrhea was still present. He started drinking his formula again.
And then Nora threw up in the middle of the night about 4 days later and started up with diarrhea again. Hello, GI bug #2.

I almost lost my mind.

Then, of course, Ryan started in with frequent diarrhea again before he truly had a chance to recover. But the second one only lasted about 12 hours. It was just diarrhea, no fever, no change in appetite, no vomiting. We can do this! 2 GI bugs in 2 weeks.

So that was short and then he started perking up again. During the recovery, the biggest problem was that the diarrhea never went away totally. The frequency decreased to 3-4 diapers a day, but each time, he was soaked from shirt collar to socks. He'd lost 1.5 pounds and diapers were loose fitting, so we started stuffing the diapers with toilet paper in an effort to soak up the watery parts--Daddy gets the credit on that idea. That worked a little, but we were still doing 3-4 baths per day, crib changes at night, 3-4 outfits changes, sanitary loads in my washing machine. For 3 weeks. THREE! WEEKS! I was on the edge of sanity again. But, BUT, he was gaining weight--like an ounce a day back from when he was the sickest, he was happy, he was playing like his regular self. He was thirsty, hungry--had never eaten this well before.

I called our GI rehab clinic to see what the heck we could do about this diarrhea. We increased the cholestyramine up to the max dose and there was no change. We called back and we were told he is probably still sick (no, he wasn't). Or he could have small intestinal bacterial overgrowth (had no other symptoms except diarrhea, but has a lot of risk factors). They said keep letting him drink as much water as he wants. They thought we should check labs to make sure he wasn't dehydrated. I declined that b/c if you looked at the kid, you would know--he is not dehydrated, and I will not stick him with a needle to tell me that. Now, if there was a blood test they could do that would tell us what the heck was the problem with his stooling after the GI bug, that I would get! So I did some research and figured out what it was: Post-infectious diarrhea. That is my diagnosis. Ahem. :)

But what to do about the stooling? Well, besides not leaving the house and doing lots of laundry and losing lots of sleep--we did lots of research. Turns out there's not a whole lot of information out there in the medical literature for diarrhea associated with pediatric short bowel syndrome. We looked into the idea the GI doc had about bacterial overgrowth and we decided that we didn't want to get into it with the antibiotics unless we were all sure of the likelihood of that diagnosis. Even our wonderful GI doc was like "I'll start him on flagyl if you want." no thanks. We do not want.

So, what to do when medical literature is lacking? Read blogs! The short gut community is full of crazy parents like us who are scrambling to figure out something, anything to help them get to "normal." whatever that is--I can't even remember anymore.

Now, after 3 weeks of this, we tried our first approach: substituting oral rehydration solutions (like pedialyte or my wonderful homemade version from the WHO) for water. The thought is that since he has barely any colon, he was overdrinking water when he was thirsty--not able to absorb it, which is one of the colon's main funcitons. The ORS are more absorbable than water (osmolarity! chemistry!). Ryan is not really a huge fan of this stuff, but as long as it's icy cold, he'll drink it.

One day into this and we are back to 1-2 normal (for Ryan) poops per day! Amazing! He is back to his usual antics.




To celebrate, I did not even do laundry yesterday!!!!!!!!!!

We've also initiated probiotics and have a few other tricks up our sleeves that we can pull if needed--there are some reports that metamucil is helpful. another option might be prebiotics. So, we'll explore those once things calm down.

Thank you to The Short Gut News and Thriverx's amazing hydration module for pointing us in the right direction. I'm going to start getting more involved in the SBS community--these patients and parents are full of amazing experiences and information that is really difficult to find.