You know when you’re trucking along through life and thinking you have a good handle on things? You get the kids to school on time with clean clothes and semi brushed hair. There is a decent meal ready at end of each day and you’re feeling settled in your work life. That is when you shouldn’t get too comfortable, because it’s all likely to change. At least that is what happens in our household. Every time we get on a comfortable path and things seem to be status quo, a big change hits us. Whether it is the temporary addition of three children into the household; a minor car issue that turns out to be major and changes us from a two car family to a one car household (in other words…I’m stranded!); or in this case, an ill child…our day to day lives suddenly take a turn.
A few months ago I started to notice weight loss in my ten year old son, Kellen. He went to the doctor and we chalked it up to a change in his medication, and decided to keep an eye on things. Over time he started having gastro issues that I’m sure he doesn’t want me to go into detail about, and we had more visits to the doctor. Several doctor visits later with no improvement, and I decided to take him off all medications. His health continued to decline, and just about 6 weeks ago he became so ill that he could no longer go to school.
He had more doctor visits, and a couple of hospital visits, and more tests than I can list. They poked and prodded and scanned and gave us all kinds of possible causes, but nothing definitive. The worst part of it all was the feeling that we weren’t being taken seriously. Test results weren’t looked at for days, and the doctors were playing pass the buck with my son…while no one was coming up with any answers. Finally, after a forced doctor’s appointment we were told we were being referred to a Gastroenterologist. After an urgent call to the doctor a few days later, our appointment was booked and my son was seen. This doctor recognized the urgency of the situation right away, and he booked my son for a scope. The day of the scope came, and with that we got a diagnosis and a week long hospital stay.
My son has Ulcerative Colitis, and he was (and still is) in the midst of a severe flare up. He required IV fluids for dehydration (something we had done at the ER during the course of this illness) and medication to treat the flare up. He will take a maintenance medication for the rest of his life, and during flare ups he will have to adjust his diet.
No one knows the cause of UC. He can go for years without another flare up, or he could have another one in a matter of weeks or months. While his diet matters to how he feels and copes through a flare up, it does not have an impact on whether or not he is in remission (unlike Chrohn’s Disease, where diet plays a significant role). I am told that this first year after his diagnosis can mean a lot of hospital visits, and that UC has already stunted his growth and the treatment for it will do the same. No one knows if his body will make up for that later or not.
So our new normal is a host of medications, multiple doctor visits, lots of poop talk and a focus on keeping Kellen well. For the next few months, we are dealing with a child who is moody and always hungry because of his medication, and after that…it will change again. My work, while still important, has been moved to the back burner a bit, and my other kids may or may not have gone to school with messy hair today because I was taking a long time trying to sort of medications and acceptable breakfast foods for Kellen. I will figure out his meds and diet and then it will be adjusted, and he will get used to the new routine just in time for it all to change. But it’s all okay because that’s what keeps life interesting!