kink in the tubing

Hi followers! In spite of the title, things are going quite well for us. Just wanted to let you know….

We’ve had a busy few weeks getting ready for Christmas, much like many others here, there and everywhere. Shopping, wrapping, writing cards, making holiday calls and visits when we can. Pretty normal.

In fact, the only thing that differs between us and any other person this holiday season is Wade’s fanny pack filled with chemo.

Overall, we’re very pleased with Cycle 2 in terms of side effects, and the limited intrusion of cancer into our Christmas. Thank you Dr. Oncologist! Your choice to reduce Wade’s dosage this cycle has made the holiday season far more enjoyable than we ever thought it could be!

Having said that, we did have a bit of a mishap last week. Nothing major, but we’re eager for our next Oncology appointment to discuss the matter with Dr. Oncologist.

The chemo unit recently did a 2 week trial run on new heat regulators to accompany the chemo baby bottles. The new version has less bulk, but a much shorter length of tubing between the regulator and Picc line connector.

The first week went fine, although we did notice that Wade’s baby bottle balloon had quite a bit more chemo left in it than it usually does. In theory, it is supposed to drain empty within 2 hours of his bottle change appointment. And that, is usually how it happens. At the end of Week 1 however, his bottle looked to have 24 hours (or more) worth of chemo left in the bottle’s balloon.

Please refer to our photos page if you’re confused by all the bottle and balloon talk. There are a few pics there that should help.

Not a big deal, said the nurses. Sometimes that happens. No worries.

After week 2 though, Wade and I showed up for his 2nd bottle change appointment (just a few days ago) and I was shocked to see that his bottle was almost full! He had received almost NO CHEMO all week long.

Initially, I panicked as I sometimes do. WHY did this happen? WHAT does this mean in terms of his long term prognosis? HOW can we fix this? Wade did not panic at all, of course. He was cool and calm, which helped me get ahold of myself.

A call was made to Dr. Oncologist and he decided what we’d do: Nothing, just yet. Wait and see, and discuss it at our next appointment.

Okay…

So, we got a new bottle and have checked it religiously ever since. Not that we’re at risk of the same error like we were last week. The 2 week trial is over and we’re back to the older version of the heat regulator, so we’ve had no issues whatsoever. Thankfully.

Turns out the shorter length of tubing between the regulator and the Picc line connector makes it easier for that part of the tubing to kink. It was kinked all week and because of Wade’s aversions to the sights and smells of chemo he was avoiding his 4 bottle checks and didn’t notice anything. Not the kink, not the weight of the fully inflated balloon, nothing. And I was trying to be less of a nag, so I didn’t force the bottle check issue.

Oh well…it’s not the end of the world. We’ll call it a learning experience for us AND the chemo unit, and we’re back on track now anyway. We meet with Dr. Oncologist next week to find out if we’ll change anything up as a result of the ‘lost week’. He’s best one to decide after all. I’ll put it in his hands. Those hands have been very good to us so far, and we’ll continue to trust in that.

Happy Christmas countdown everyone!