Anxiety; she never leaves.

Yesterday our son had a (new) kidney biopsy. New as in 5 years ago this coming March our son got a new kidney from a family friend (and skilled surgeons). We’ve been asking to try to remove prednisone from his anti-rejection drug cocktail for at least 4 years as we believe it has had a negative impact on his mental health.

Our daughter had a kidney transplant 2 years ago and since she is on a no steroid protocol – and doing well – so one doctor is willing to try to stop pred but only if we can prove the new kidney is okay. The biopsy is to rule out any underlying rejection of the transplanted kidney.

During any given procedure, surgery or lab draw, we can expect there to be a little anxiety by our son. First, we’re going into the hospital where nearly all his medical care has taken place. Second, it is certainly the place where he was awake during a surgery. Anxiety showed herself today, as proof is this picture. I’d finally gotten him to chew a washcloth instead of the latex gloves and tourniquet.

A different experience for us during this visit is that for the most part he was calm. In the past if he was anxious he was defiant, rude and he wandered and tried to distract us all from anything we were doing. This time I noticed instead of retreating from the situation he faced it bravely. I don’t just mean he sucked it up; I mean he talked about the awake surgery, he asked the nurse and doctors when he’d be asleep, and he triple checked when the doctor was marking where his kidney was that he wasn’t going to start the biopsy before he was asleep. “How will you know I’m asleep?” was a great question to the anesthesiologist. He didn’t need me to intervene, he just needed me to support him and confirm that he was doing the right thing by actively participating in his care.

Over the last year he’s been advocating more for himself in his health care and while it doesn’t surprise me because that is ultimately what I want and have been striving for, it is still surprising somehow. He’s been listening. All those times I questioned, pushed, cried, demanded in front of him may have had a two-fold purpose; both taking care of him and teaching him that control can help the anxiety.

He amazes me by just waking up and facing each day and yesterday was no exception. My 12-year-old was anxious but in control.