Long day. Ugh, another long day. Since I don’t have the energy for drama and good story-telling right now, let me cut to the chase and tell you that he has a PICC line after a serious and sustained effort at replacing the Mediport.
He was in surgery for four hours, not quite the “quickie” we’d been hoping for. They attempted to rewire the Mediport, but ran into the same problems the docs had had the first time. Turns out our dear little Austin has a rather unusual vascular system. Really, like this should surprise anyone. Where the rest of us have veins that run straight across our chest, his are a series of zigzags and peaks and valleys. They reexamined his past ECHOs, EKGs and cardio-ultrasounds and determined that this isn’t actually a problem (just Austin’s “unique anatomy”), except when placing a central line. Too bad he’s needed several of them.
They were ultimately able to place a PICC line that dangles out near his left inner elbow and runs up his arm into his chest. Even the PICC line was a relief because that didn’t work the first few tries either and they were actually considering running one through the femoral vein in his thigh. I was seriously disappointed when I walked into the recovery room and saw that bandage on his arm but we’ve already begun to adapt to it and I think it’ll be okay. It can’t get wet so baths will be tricky, involving Press n Seal and lots of tape, but we’ll manage. We also need to flush it with Heparin every eight hours, which will surely cause some scheduling chaos (sleep-time lasts longer that eight hours after all), but again we’ll manage. As long as the damn thing works . . .
He’s still in the hospital tonight, this time with Mark, but is set to be released first thing in the morning. One of the hardest things about the constant changes in our schedule is what it means to Braedan, who clings to the given date and blames us when it changes: “You said you’d be home tonight! Why do you always tell me you’ll be home and then not come home?” So over and over again, I tell him that we don’t like this either and we all have to be flexible and do the best we can. But when you’re six and just starting school, you learn to follow rules, to do what you say you’re gonna do, and you expect everyone else to also.
And poor Austin. He has just been through the ringer. He was feisty all day today. Woke up happy after a great night’s sleep but was then most disappointed not to be allowed to eat and spent a good chunk of the morning screaming for a grilled cheese sandwich as if maybe I just hadn’t heard him the first time. He came out of surgery in an angry fog, and only let up to scarf down two grilled cheeses in a row. As I sat on his bed being trained on how to care for his new line, he was just furious that I wasn’t devoting every second of my attention to him and started throwing his toys at me, including a matchbox car that hit me square in the face.
It has to be extremely confusing for him to have the people he loves and trusts the most inflicting pain on him, or watching as other people inflict pain on him without doing anything to stop it. We’re constantly telling him this is for his own good, “to help make you all better,” but he never felt sick in the first place, so he’s got to be thinking, “All better from what?” Cancer is a completely vague concept to him, some invisible evil we talk about and fight against but without him ever understanding why.
Maybe that’s the crux of it right there: maybe none of us understand why.