Last week, I had a not so gentle reminder that this disease, and the medical trauma caused by attempting to treat it, still have a strong grip on my child.
I should celebrate – the end result was that his ears, nose, and throat, and his eyes are stable. They do not show the deterioration that Hunter Syndrome normally causes. But what did it take to get those answers?
The ENT appointment was unremarkable. But it involved an hour wait, thus causing the first wave of discontent.
And if that had been the only thing on our list, I think we’d have made out okay.
But he had an ophthalmology appointment an hour later. So we killed some time, played on the stage at Vanderbilt Children’s Hospital, got a snack. All was good.
When we first started the eye exam, it definitely took more coaxing and bribing and timeouts than typically is required which should have given me pause.
But then we got to the eye drops. I was hopeful that we could do it all without hands on restraint. We tried. But we should have tried longer.
Doctors and nurses aren’t always the most patient people. Even when they work in pediatrics unfortunately. And most have no real understanding of the medical trauma that children with chronic medical conditions endure.
So yes, we had to hold him down, while he fought, so much so that they suggested next time he be sedated. But the fighting is often the direct result of the restraint, not the purpose of the restraint (the eye drops).
And he finished the eye exam, after much work, awhile later. But the toll of the restraint, the prodding, the tasks then reared it’s head.
He had a complete and utter meltdown in the waiting room. Kicking. Screaming. Crying. Flat on the floor. Climbing over chairs. Running like lightening. For.a.while.
It was mortifying for the staff. The patients and families. His brothers.
I had to physically carry him out and to the car where I cried like a baby. The reminder that even in a child so miraculously improved, that the disease and it’s treatments take such a toll.
I hope and pray that this reaction does not set us back in the tenuous balance we’ve achieved for his infusions and other procedures, but only time will tell.