When we go see a new doctor, we look for signs. Is this gonna work out? Does this person have their shit together? Most important, does the doctor seem to care about our Tess and her particular health issue? Sometimes the answer is clear. There was the time we went to a gastroenterologist for a followup visit a couple years back. He came in frowning, seemingly deep in thought about Tess and what to do for her GI issues, and then recommended that we have her scoped. Problem was, he had just done her scope. Literally two weeks earlier. This was the followup visit to get the results of the scope. Dude, come on. I know you're busy, but take a 5-second glance at her file before you enter the exam room with us, will ya?
Anyway, when we go see Tess's new endocrinologist, we get a great sign right up front. She has already looked up the paper published in September 2015 by the team at Baylor who works on USP7, and she's read every word. So she knows about Tess's gene and the whole neurodevelopmental disorder that our girl has going on.
The doctor wants to get the full picture of Tess. And here's the part of the visit that we know is necessary, but is like a punch in the guts. The doc starts asking questions. Any anesthesia events? Any surgeries? And just like that, without warning, we are reliving some of our darkest days. The sleep studies we tried, each the same, a four- or five-hour battle, us holding Tess, when they smeared grease in her hair and tried to attach leads that she kept pulling out, all while we tried to get her to drift off, both studies ending in the same determination: inconclusive. Which is the scientific way of describing what those studies actually were: a shitshow, through and through.
We are back in the week we spent in the hospital with Tess after her most recent hip surgery, with her doped up on serious pain meds because they'd made incisions on both sides and essentially bolted her bones into place. We're feeling those days after that surgery, when she'd wake screaming in the night as the pain meds wore off, and my wife and I would sprint from the bed, one of us scooping up Tess, the other rushing to fill the syringe and give her some relief.
As we do this, we are both mentally cataloguing the scars on our girl. The four-inch stretches of dark purple on each thigh. The quarter-sized mark, a deep gouge in her back, where we took a skin biopsy to send to Baylor. We are right back in that hospital room in 2012, the hours blurring together while we numbly binge-watch Netflix and Tess sleeps off and on.
In some ways, we cannot believe that she is that same girl. Who did all that stuff and went through those days and nights. And we certainly can't comprehend that we are the same people. Walking through that history out loud brings it all back. For the rest of the day, in spite of our optimism about this doctor, my wife and I have a difficult time recovering. We're in a fog. TBE sets in. We can't hug Tess tightly enough.
The news from endocrinology is concerning, turns out. The doc believes that something is afoot, for sure. Tess has dropped off dramatically in both height and weight in the past couple years. That's a red flag. This points to her maybe lacking growth hormone. So we plan to get some blood tests for Tess. Even if that is the issue, it seems like treating her for that isn't the greatest idea. It would require daily injections and would probably only get her another inch or two of height. We tell the doc that honestly, since we carry Tess so much, it's probably better if she doesn't get huge on us. Smaller is certainly easier. But we still want to get to the bottom of this. There could be thyroid stuff happening. We need to know. More on this to come.