Wednesday, April 14, 2010

Seriously? Seriously.

How is it only Wednesday?

This week, there have been the mischievous stylings of Daniel Griffith. (His pièce de résistance would be covering the white vanity in pink nail polish. I could only get it off with nail polish remover, but now the table needs to be repainted because I have removed all the gloss. Obviously, Daniel thought I didn't look busy enough.) There have been the Dallas-worthy dramatics of Natalie Griffith. ("I don't like you today! You NEVER let me do anything! Why can't I have email?") And then there was today.

Today was picture day at preschool. I was trying my best to get the kids somewhat presentable so they wouldn't hate me when they are older, thumbing through old photo albums. I got Nat & Dan dressed, only needing to put on their shoes. On the way to the shoes, I walked past Eve who was standing in the dining room saying, "My port! My port!" She often touches it and talks about it, and I thought nothing of it. There was no distress in her voice at all.

"Look, my port!"

I look down at her as she pulls up her nightgown to expose her port. Something is very strange, indeed; it is like her skin is sticking to the nightgown and being pulled out as she tugs on the fabric.

The moment of realization of what I am seeing sinks in. Oh God, eww.

Yep. That's her port alright, turned sideways, like a very large coin trying to poke through her skin. Again, no distress on Eve's part. She's as cool as a very cool cucumber. Me? I am distressed. This reminds me of the chestburster scene from Alien. I call Matt into the room to see if he wants to touch it, because I simply cannot, and he gives it a go with no luck. We dial Duke and decide we will take her out there as soon as we drop Nat & Dan off at school.

Which brings me back to the shoes. Daniel has yellow fire fighter rainboots that he likes to wear with everything (shorts included), and today is no exception, even though they don't go with his black pants and button down shirt. I want him to wear some loafers. Eve flashes me her port again and I easily give in to Dan's demands. So now, when I look back at these pictures of this child in dress clothes and yellow fire fighter rainboots, I will also remember it as the day Eve's port about popped out of her chest.

We leave the kids at preschool and take Eve to Duke around 10:00. At this point, the port is not sticking out sideways anymore, but has completely flipped over to the wrong side, so we lose any chance of having them fix it non-surgically. And guess what percentage of kids have their ports flip? Uh huh, 5%. And our oncologist wasn't surprised "considering Eve's propensity to experience rare complications."

The surgeon will go into her chest and flip the port over. The port has small holes where you can stitch it to the patient. Eve's surgeon will use these holes this time. Not all surgeons use the holes. I don't know why. All I know is I'm tired of Eve being in the 5% of things. Note to anyone out there who might need a port: DEMAND THE STITCHING, or at least ask nicely. Maybe I'll start a Facebook group called, "If we get to 1,000,000 fans, surgeons will always use the holes."

So here comes the big jinx: no chemo on Friday. The drugs just aren't something you want to mess around with in an IV attached to a two-year-old. There was some horror story told to us about a girl who needed a skin graft when her chemo leaked out of the vein into the top part of her hand. So yeah, I'm cool with waiting. But for the record, this jinx is on account of a technical difficulty rather than low blood counts.

We waited and waited and waited some more for our 3:15 pre-op appointment. Downstairs Eve did not make an appearance, and for that we are eternally grateful. Finally, it was time to check in. Forms to fill out and sign for anesthesia, an exam, and blood work, all with trips to the waiting room between each step. I feel bad for Eve when she grows up and has to fill out medical history forms.

Finally we were freed and left to pick up Nat and Dan from the nice family they were farmed out to, getting home around 6:00.

*If* Eve has an early enough surgery on Monday to fix her port, they will leave her accessed and send us to the clinic to get chemo. If not, then we come back on Tuesday. Just as long as it's not next Thursday, which is when Daniel is having his adenoids removed.

I can't wait to see the box of EOBs that arrives after next week. Hey, ane$the$iology, just add it to our tab.

No comments:

Post a Comment