This past week took us down an old road. It took us to back to the emergency room, a large abdomen, blood in the stool and the realization that making even the tiniest of change to Caleigh's regimen would land us in a place we didn't want to be.
Last Thursday we picked up and started an increased dose of compounded sulfazalazine medication that Caleigh takes for ulcers. Boston needed to increase the dose for her weight and they wanted to give it to her in liquid form which she would absorb better. We went back and forth with our pharmacist about what the compounded solution couldn't have in it. It was clean of things that Caleigh hasn't tolerated in the past. So we started it.
One day later, May 8th, Caleigh wasn't feeling great. She had a small amount of bright red blood in her stool and her tummy was getting bigger. We had labs and a urine sample to complete that afternoon anyways, but I called Boston to tell them what was going on. We decided to stop the compound and go back to our regular dose and powder form. They also wanted Caleigh to be seen by a doctor just in case. No one in our GI office would call Boston back and our Pediatrician, who has been great with the transition, said she would see us. Looking at the time though, 4pm on a Friday, she decided to send us to the ER where we could get all the testing done in one place.
So we went to the ER. We broke our streak. Caleigh hasn't been in the ER, much less the hospital since February 2010. It was a long break and after being in there for a ridiculous six and a half hours we remembered why we avoid it at all costs. Going to the ER was silly really, but I understand that Boston doesn't know Caleigh and they can't take any chances being so far away from us. It took three sticks for an IV just in case she needed fluids, which she didn't. X-rays were fine and so was blood work and urine. We got home around 11pm that night.
The next morning Caleigh was really sick. Not tummy sick, but definitely head cold, flu-like virus... not feeling good. She slept upright next to me in the recliner most of the day. We slowed down her feeds, rested a lot and dumped tons of saline in her nose to keep things loose. Thank goodness our girl blows her nose like a champ.
By Sunday she was much better and the one time blood in the stool didn't continue since we stopped the newer version med. It was all just a coincidence of events which is usually Caleigh's style anyways. She gave Eric the bug by Tuesday, I got a few days of nausea and exhaustion and we all continued to generally feel terrible most of the week.
Boston has decided not to make any other changes other than increasing calories before we head back up to see them. They (and us) don't want to be sitting in the ER and back tracking until we see them again. We're not rocking that boat.