On Monday, Jim and I both came down with a stomach bug that knocked us out. As ileostomy parents, nothing strikes more fear into our hearts than a stomach bug. Except obstructions, and prolapses….maybe it would be more accurate to say that stomach bugs are one of the things that strike fear into our hearts. Stomach bugs usually mean a trip to the ER for fluids and sometimes an admission. We tried really hard to keep our germs away from Zack……..

Sadly, Zack came down with what we believe is the same virus on Tuesday. He wasn’t throwing up, but his output was out of control. Zack’s output is always higher than normal for an ileostomy. He averages between 1,200 – 1,500 out daily. This is higher than it used to be for some reason. He goes above 2,000 once or twice a month. Last month he hit an all time high of 2,850. It could have been March….I don’t know, I am tired. At any rate, recently he hit 2,850 ml of output in one day and that was pretty darn high. We took him in too make sure his serum sodium was doing okay and we were pleasantly surprised to learn it was 138! Anything 135 or higher is considered normal.
Zack should be the poster child for CeraLyte. It has literally saved his life several times over. Anyway, he was still given fluids to help offset his losses and we were on our way.

On Tuesday, Zack hit 4,000 ml of output in a 24 hour period. That is the same as 2 – 2 liter soda bottles of soda. That’s a gallon of poop out of his skinny little body! We were in contact with his doctors and Dr. Sarah, our neighbor, came down to check him out. His heart rate was 108, his blood pressure was 105/56, his eyes were sunken, he was sitting quietly on the sofa and generally not acting Zack-like. My mama radar was not happy, so we all decided to take him in to be seen and to get IV fluids.

Zack’s serum sodium on Tuesday was 133. That is considered low, but with the volume of fluid flowing out of his tiny body it felt like a great number. His urine sodium level was undetectable, per usual. Another ratio was also off, possibly his anion gap ratio for those of you medical people. I am not really sure, but they could tell he was dehydrated and wanted that ratio to be back in line. Two boluses of fluid later, his serum sodium was back up to 136, the ratio was better, and we all felt comfortable bringing him home with the stipulation we see his doctor in the morning. I mean, by that point it was 4 AM and technically already morning, but whatever.

We got home and crawled into bed at 5 AM. By 6:30 AM, Zack’s output was already 1175. The rest of yesterday was spent on the sofa. ZP actually took two naps and took himself up to his room and went to sleep for another 1/2 hour. Um. Have you met Zack? He does not just sit. He never naps unless he is really sick. His eyes looked bad. Everything was making me worried. At 5 PM I decided to stick him in the shower to see if that might help him feel better. Here is how he looked then:

Jim and I were both concerned. However, by some miracle, he felt so much better after that. He had some spunk and even got in trouble for something silly. We were feeling much better and convinced his illness was on its way out.

You know there is more to this story, right? Overnight Zack had 550 out at 2 AM. At 6:35 he had another 725 and by 9:30 this morning he was at 1950 ml of output. Here is the crazy thing about Zack. He is not acting overly sick. He’s still on the sofa, but has some spunk back. His eyes look a bit better. Here’s a picture from this morning. But the output……

Jim and I were so conflicted about the best course of action. We texted his GI, but he’s got a life, a job, and other patients, so we are still waiting to hear from him. His pediatrician and I came up with a plan for now. Given Zack’s dislike of hospitals, we are going to hang out here for a bit, continue rescue dosing with CeraLyte, measuring everything that comes out of his body (including urine) and everything that goes into his mouth. If it becomes too much for us to handle, we can admit him and have the doctors take over the monitoring for us. My threshold for that is how quickly his output gets to 3,000 ml out and/or he becomes lethargic.

My mind is blown that our new self-imposed threshold for output is 3,000 ml. His doctors have taught us to trust our instincts and we have been doing pretty well with that. We now go by symptoms more than output, whereas before we went by mostly by output. One fear his doctors have expressed is that Zack may become so used to being low sodium that he will not realize when he is in trouble. Happily, everyone believes this current craziness is due to gastroenteritis and will eventually pass.

Another thing we discussed is that Zack’s daily outputs are continuing to become higher. His output has always stumped his doctors. What Jim and I do not know is if this means his disease is worsening or if it is an incidental finding. I mentioned in my last post that we are hoping to head to Boston to see a doctor who works with kids who have short bowel syndrome. That is still our plan. We are just waiting for the insurance referral to be authorized, the doctor in Boston to have an available appointment, and the stars to align. Until then, we are hoping this stomach bugs passes quickly and that we are able to manage his sodium levels well.

Hug your babies!

~ Dawn