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Two Iowa City trips in five days isn’t my idea of a good time.

But. Let’s start with the good news. Because Kiran has had this flushing symptom for going on two full years now, I was able to notice a trend. Both last year and this year, the flushing is practically non-existent during the summertime. Hematology/Oncology doctor said that if this was a neuroendocrine tumor, we wouldn’t see the symptoms go away, certainly not seasonally. We should be seeing the symptoms slowly increasing or new symptoms adding on.

This is what I had hoped she would say and how I expected the appointment to go. As long as Kiran’s labs come back within normal limits (from what we’ve seen from him – a couple things have been high), we no longer have to follow up with her. We can contact her if we start seeing other symptoms or the flushing escalates, but otherwise a rare thing happened today: We took a specialist off Kiran’s team! Hurray!

Of course, we may have added one on, but hopefully only for a season. We saw GI today, and Kiran was officially diagnosed with chronic common constipation, not because of a disease (that part is good anyhow). Different from the last GI doctor we consulted, this one told us Kiran will likely need to be on a maintenance dose of some form of stool softening medication for the rest of his life. He was prescribed something different than what we tried last time, at my request. This means there is a clean-out in our future, starting tomorrow.

I am really battling myself with this. I feel like I have let him down – I have worked so hard with diet and exercise and natural remedies to get this under control – and ultimately, it didn’t work. I don’t know why this hits me so much harder than when medicine was prescribed for his heart function or eye drops are prescribed for his vision needs…why do I take this one on as a personal failure? I don’t know, but I’m trying to work through it so I can let it go.

The important thing is I recognized that despite my most valiant efforts, what we were doing wasn’t working. It wasn’t solving Kiran’s digestive issues. And it’s going to be so important to get that remedied prior to all day school. And certainly for his comfort.

Despite good news, bad news, neutral news, these days are hard. They always take it out of both of us, and likely out of our supports as well. So tonight, we snuggle, and likely go to bed early!


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