A thousand paper cuts
We had a day once, back during the first round of cancer, that a nurse described as The Day of a Thousand Paper Cuts. We were in the PICU following one of Austin’s surgeries and he was on temporary dialysis but the dialysis machine kept breaking and leaking water all over the floor. When a different machine was finally brought in (and these are huge machines that take up most of a hospital room), the catheter in his thigh wouldn’t work. It wasn’t the end of the world; we eventually made it all work out — a thousand paper cuts won’t kill you after all, but, man, do they hurt.
That’s how we feel again today — like we’re being battered and annoyed and delayed and distressed by a thousand paper cuts.
Austin’s Mediport continues to be the source of nothing but trouble. When we did that ultrasound last week, we did find a small clot forming not in the line but near the line in his left internal jugular vein. This clot is not what we were looking for (an explanation for why we can’t draw blood off the line) but it is of course a problem that needs to be fixed before it turns into a bigger problem. And the way to fix it is to give Austin a nice little blood thinning medicine that has to be injected under his skin twice a day for three months. And I was worried about those Neupogen shots once a day for a week! Ugh.
But that’s just the beginning. Today they did another chest x-ray to see if they could further determine how usable the Mediport even is. And it’s not. Its position has shifted slightly over the course of the past month and it’s now lodged under his clavicle. It’s still usable for today’s chemo but tomorrow he’s scheduled to have another surgery, albeit minor, to replace the line, which no one is even positive they can do.
If the surgery they’re attempting doesn’t work, he’ll end up with a PICC line instead which runs along his arm. I’m not completely familiar with the pros and cons of all these varied central lines (remember, I’m the one who thought the Mediport would be a breeze compared to the Broviac) but I do know that the PICC line is the third and last choice of doctors and there surely must be a reason for that.
Oh, and now we’re not sure if we’ll even get to go home tomorrow or if that will be delayed until Thursday. Ugh.
Chemo has been fine. Austin was a total grouch today (before his much-needed three hour nap) but the effects of chemo are seemingly non-existent. It’s just these damn paper cuts we have to worry about ….
Hi Krissy & Mark,
Just want to say hello. We are thinking of all of you. Hoping this surgery goes well tomorrow with this line, and it can do what it needs to do and stop causing Austin and all of you grief that you just do not need. Ugh is right! Much love.
Krissy,So, so sorry that things are so hard. “Papercuts” can be so frustrating and painful, especially in an already painful situation, they just exacerbate everything. I am praying that this journey only gets easier for you guys and that you continue to have the stregnth you all need to keep going. I know it is hard but you guys are doing an amazing job!
Love to you all,
Karen
Krissy, just a note in case no one has mentioned it. I have a clotting disorder and when it was discovered with a major clot I was put on blood thinner. No one told me at the time that Vitamin K messes up the PT readings that were essential for getting my twice a day shots at the right level. I am a vegetarian which means lots of things like falafel, spinach, kale, parsley (in tablouleh), asparagus, soy beans (b/c of the quantity I eat as a veg) and so on. Maybe Austin lives on kid food and this is not an issue but I thought you might like to be aware.
Thanks Amanda. Edamame is his go to veggie.
Hi Krissy. Sorry about this latest bump in the road, but that’s all it is – a bump in the long road to Austin’s full recovery. Of course you are allowed to have a down day but try to remember the big picture. As far as the PICC line goes, my dad had PICC line in his arm, a Broviac, and another one in his neck at various times during his treatment for leukemia. I found out that everyone has a different preference – some people like the PICC better than the Broviac. If one type of line doesn’t work for the particular patient, there are always other options, so try not to worry about “what if” they can’t replace the current line. I am wishing Austin strength and health every single day. -Leslie
Krissy, hope things went well today (whichever “line” ended up being the best). There are always, always issues like this – there were several times they needed to put clot busters into Abby’s line to keep it open, but once they cleared up the problem, things went well, so just another thing to get through! The new house sounds so wonderful – something to look forward to! Barbara