One Day

One of these days, we will figure out what is wrong with Clay.
Clay has been fighting something in his gut for over two years now. If I'm honest with myself, it's been over 3. When he was born he didn't gain weight and was admitted twice in his first week of life. We blamed it on me not making enough milk, but we know better now.
Sometimes I want to punch those doctors in the face for making me believe that I was a failure, unsuccessful at nourishing my child.
We saw a doctor in CA who ordered a myriad of tests and we thought we were on to something when Clay had to have his gallbladder removed, or when he was really anemic. These are specific diagnoses, they MUST point to something! After his endoscopy and his gallbladder removal in 2010 and everything came back inconclusive or negative, the doctor and surgeons shoved us to the side until me moved away.
When we moved to Florida, he was doing somewhat better and the new doctor seemed promising. He sat down with me for almost a whole hour and talked me through things.
But as many of you know I'm sure, conversations are different when the patient is well vs. sick. Of course, it all seemed to make sense and it was so wonderful and the doctor is so understanding and he must be a genius because things are GETTING BETTER! But none of that was thanks to him, but he sure got all the credit.
But when Clay's health started going downhill in December, all of the sudden I can't get an appointment, the nurses take days to call me back and even then, have no answers for me. The doctor orders one test or offers one idea to pacify me and then tells me to come back in 3 months. They don't call me back with results and I have to hound their office for 3 days to get an answer.
Good thing I called to ask if he was lactose intolerant 2 weeks after the test was performed.

"Oh, yep, it says right here he is lactose intolerant."

"Was anyone going to call me about this? Let me know to stop feeding him Mac N Cheese everyday maybe?"

"Oh, no one called you?"

This is the general run around I get with any calls to the office. When Clay got a hold of the Naddy stomach virus of 2012, he was hit so hard he was hospitalized. He took Zofran for 3 days, was asleep for 4 days* and threw up for 5 days. He is still having diarrhea when he eats solid food.

Before that, he had a 10% weight loss in the month of December, I can count on two hands the number of normal bowel movements he has had in 3 months. He hasn't slept through the night in probably 4 or 5 months screaming with abdominal pain. His belly looks like a starving child's. It's enormous, full of bloat. And his extremities are so skinny. (I have started weighing him and taking pictures of him on the first of the month but figured it was inappropriate to post them here. No matter how cute his underoos are)

It's okay, the GI doc can fit us in in March to talk about it.**

Finally, I think we have someone on our side. We have been working with a PA in the peds clinic. He is the one who saw Clay outpatient as well as admitted him when he got really sick. He even called the next week to check and see how he was doing. When I told him Clay wasn't a whole lot better, he ordered some more tests and gave me his direct office number. I talked to him today and he is going to help us navigate thought this as best he can.

All I can do is document everything; food, (I write down what he eats every day), toileting, weight and I take pictures. Maybe, ONE DAY a doctor will look at all of it and put it together....maybe one day.

*When Clay was sick, he slept for 4 days straight. He was responsive to harsh stimuli (putting the IV in - although it was just tears, not a fight) and could answer yes and no. But he could not wake up to drink, eat, pee or move. He literally laid perfectly still with his eyes closed for 4 days. Like he was conserving every ounce of energy his body could muster. It was very bizarre, and I've never seen anything like it.

**Luckily, I got a phone call this afternoon saying there was a cancellation and they could see me tomorrow afternoon. Wish me luck. If this doesn't go well, we will probably going to Birmingham for a second opinion.