Things with Nate started getting a bit unsettling a week ago. He had been recovering well from his collar bone injury. But suddenly his energy level and disposition sort of tanked. Tuesday and Wednesday I was noticing an increase in his heart rate and respirations. I consulted with one of the great ped cardiology nurses, and concluded he was most likely fighting off a virus of some sort. His heart rate, while high, wasn't an SVT (which he's never had, anyway).
He continued on having episodes of acting quite lethargic, then times when he would act more like himself. However, his appetite was horrible. I would estimate he was eating about 1/4 of his usual amount, and often simply refusing to eat. He complained on and off about his tummy hurting, and on Saturday, said his ears were hurting. We started on some Advil, and noticed improvement for several hours after each dose. I had to work hard for every bite of food he got in him. Tough to see him like that - just refusing food.
Today we had our follow up with cardiology. Turns out the gradient across the PA band is still showing the same pressure as last time, 6 weeks ago (it had dropped from a 'getting better' reading of 65 to the same pre surgery reading of 35). So, now the question to the surgical team is why and what to do next. Cardiology conferences each week with the surgical team, so she will present Nate's case, hopefully next week Tuesday. There, they can discuss some preliminary ideas (valve repair/replacement - uncertain with his transposed anatomy causing that valve to be irregular to begin with; or heart transplant), and take it from there.
They weren't equipped to check his ears at this clinic, but together we did attribute his weight loss and lethargic behavior to this (whatever it is that he's fighting), and not necessarily his heart. I was disappointed we couldn't check it while we were there, because I'd really like to know if his ears are indeed the problem, and whether or not it's a viral or bacterial issue. We drove straight home, prepared to get him to the clinic or urgent care, but he fell asleep as soon as we got home, and slept for 2 hours - which he needed. We'll see what the morning brings, and take it from there!
Thank you for your prayers. I couldn't have been happier when he ate some food willingly on the drive in this morning. And even though upon arrival at the clinic, it was loud and clear that he had arrived - and the receptionist actually called him Tantrum Nate (!) he did settle down VERY nicely, and was fabulous for his echo and exam!!!! And who would have known that the steak knife I had in the van to cut the pear for him while driving in, would help out a mom in the parkade at the hospital, who had just arrived from the airport, and didn't have anything to cut the plastic straps off of the stroller from their flight!