Yesterday morning was spent in the ER with Hayden. Her stomach is acting up again, or I should say still, but yesterday was a particularly bad day. The ER is not a great place for a kid with an aversion to needles, especially when she is pain. When asked, she described the pain as a 9 out of 10, and I think that description included her frustration, and the fact that she has reached her limit for pain tolerance and endurance. They took seven tubes of blood, gave her a shot for nausea, and attempted (twice) to put in an IV in order to give her a second medication. They failed and gave up. The thing about the ER is that they are focused on relieving her immediate pain and not on finding out the reason for it. Yesterday, they succeeded only in administering a medication that caused her to sleep the remainder of the day, and have zero appetite when she woke.
It’s heartbreaking as a parent to see your child in pain, and frustrating to not only not be able to fix it, but to seemingly not be able to find anyone else who can fix it either. We have been to doctor after doctor, put her through test after test, and adjusted her diet with no better result than temporary relief, no definitive diagnosis, and mounting frustration and desperation. My baby lives with constant stomach pain and nausea, and the worst part is that she has learned to live with it. She doesn’t complain every day because she knows it won’t do her any good, she knows there is nothing we can do to make it go away, and she worries that people don’t even believe her.
We are lucky to live in Connecticut because we have not one, but two renowned children’s hospitals within our state, both near enough to us to be able to utilize them. We had been seeing a GI specialist at Connecticut Children’s Medical Hospital, she ran several tests including an endoscopy and a colonoscopy. Hayden was quite unpleasant to her, in part due to her frustration and discomfort, and in part because of her white coat syndrome. I actually liked that specialist, though she really didn’t come up with any definitive answers other than lactose intolerance and probable IBS.
We have since changed our regular pediatrician. Our new doctor works more closely with the children’s specialists at Yale, so we are waiting for a referral to them. In addition, I’ve made her an appointment with a new therapist because we know that some of the issue is anxiety induced. We can’t blame it entirely on anxiety, there is a definite physical component, but certainly anxiety–whether general or stomach related–plays a part. I’m looking to this appointment with my own sense of anxiety and expectation; I so desperately want this new therapist to be helpful. Hayden needs her to be helpful.
When we took her to a therapist a year or so ago she initially liked the woman, but that turned quickly, making the appointments a waste of time and money, and we ultimately ended that relationship. Hayden was resistant to finding a new person at first, but is now willing to try again. It takes time, trial and error to find the right fit, I think, so we are hoping that this woman will be great for Hayden. She comes highly recommended.
Meanwhile, she goes to school and sits in eighty minute classes in complete discomfort. She comes home and tries to find something to eat that won’t worsen her stomach ache. I slept in her room last night and snuggled her while she cried in frustration and exhaustion. We need an answer, and we need one soon.