Understanding Why
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” as Jeff calls it), except when trying to place 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 for 3-years olds 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 do that too.
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 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 sandwiches 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.
Oh! Krissy!
Hugging you.
Oh God Krissy, I am sorry. Sorry for ALL you guys….
Love and prayers,
Karen
very, very hard. i feel for you.
Krissy,
Hi – I am a friend of your parents – I just started following your blog. Your strength is truly amazing. I just want you to know that Austin and your whole family are in my thoughts and prayers daily.
Joanna Baker
Krissy, sounds like a long ordeal! Are you sure about having to heparanize that PICC line every eight hours? That doesn’t sound right to me – there are more long acting heparin solutions – that just doesn’t sound right. You’ll get through this. It will be a pain, but you’ll get through it. I know how hard it is when you have another child you have to take care of as well – physically and emotionally – trying to explain everything at just the right level to each of your children, while keeping the family intact – again – physically and emotionally. But as you’ve seen, kids are so unbelievably resilient, in every way, and you are doing everything right. Lean on others – so many people are there for you – Barbara
Hey Barbara,
They said because the PICC line is so much thinner than the lines for a Broviac or Mediport, it needs Heparin more often. Already I’m wondering how I’m gonna get his long sleeved jammies up over his arm far enough to flush it tonight. Argh.
Krissy – sounds like you’ll have to use short sleeved jammies, or snip the sleeve off just above the line. I do think it’s worth talking again with some line experts – I remember there were times that the nurses would flush Abby’s port with short acting heparin, and then we’d have to remind them about the other heparin so it wouldn’t have to be flushed as often. I know that PICC lines are different, and maybe they’re different in kids as well, but I know I’ve had my own patients with PICC lines and I just don’t remember them having to be flushed several times a day. I know only too well how this all just sucks – but what choice do we have – just have to keep going and get on through it…. one step at a time…. But just think of this – Austin’s been through two rounds of chemo, he feels good, he still has that little kidney, and it’s still working! Barbara
It all seriously sucks…for everyone: you, Mark, Austin, Braedon, and your mom and dad. What a shame that the mediport didn’t work. But, Austin is still here, still has a functioning kidney, can walk and play and talk and laugh. Hang in there. We send you lots of love and strength and good wishes.
I am not sure what to say, except bummer!! Poor Austie! It may be worth cutting a sleeve, poking some holes and threading a shoelace through to keep him away from it, but easy access for you. There is always “arm bras” just like the belly one. I think you can see why this is option 3-are they optimistic that they can do something in time, or this is it for the duration of therapy? Let me know if there is anything I can do.
Sending lots of wishes your way!
Ann