It has been "one of those days" from the moment we woke up this morning!
But since I have already filled y'all in on the earlier part of our day, let me fill you in on the rest of today's suck-fest, or as I like to call it, the Broviac Hokey Pokey!
Sarah's broviac just came out at the end of July (scroll back to July's blogs for a detailed account of how much that sucked), and then she had about a month and a half before she relapsed just recently. It wasn't until yesterday that the doc informed me that the port by itself wasn't going to cut it with the treatment they had in mind, they needed more access. So we had a choice: Peripheral IV (your standard, run of the mill, ol' fashioned IV that everyone and their mother gets in their hand or other extremity), which there was no way in hell with Miss Wiggle Pants over here. Next; PICC line, (Peripheral Inserted Central Catheter, similar to the broviac in that it's outside the body, and runs to a central line, but it's inserted peripherally; sort of like if a Peripheral IV and a Broviac had a baby! :) ) which usually gets inserted into the forearm or the crook of an elbow, and which my active girl on a good day would pull out in about 2 seconds. Yeah, not gonna happen. So we opted for the Broviac. Hence, the hokey pokey, cuz it just came out, and it's going back in. Get it? Yeah, I know, but I'm tired, what were you expecting, Shakespeare?
So, yeah...the whole SSU experience..let's just say that it was less than stellar today.
Usually, the policy on oncology kids is that they pick them up no more than 20 minutes before procedure time, so that they aren't waiting around, catching God knows what in the SSU (Short Stay Unit, where they perform quick surgical procedures), where it is about 50 below 0 at all times. I swear, there was a freaking polar bear freezing his ass off down there. I know germs don't like cold, but I could see my breath, people, turn it up a notch, wouldja?
So, true to form, procedure is at 2, they pick us up at 1:30. Awesome-sauce Cancer mom that I am, I am ready. Reusable bag full of snacks and stuff to do, water AND Gatorade (that's right, that's how I roll!), etc. I'm prepared and ready. Until Sarah poops the second Kara picks her up. Okay. Still not a problem. I grab a diaper, some wipes, and vow to change her when we get there.
We walk down there together, the transport guy, Kara and I, in semi-silence, and when we get to the SSU, Sarah's chart is waiting. Cool. They're ready. We walk in, I say wassup to the penguin in the corner (is it REALLY necessary to keep it so cold down there?) and proceed to answer the usual questions. She is allergic to Vankomycin, Pentamidine, Dapsone, Paper Tape and Emla cream, but the creamy part, not the lidocaine. Yes, I carried her to full term. No, she doesn't have asthma or diabetes. If it weren't for this blasted cancer, she'd be a healthy girl! Kara makes it a point to explain to the nurse that she is NOT to remove the port, which is accessed and hooked up to IV fluids. She said this in front of me, several times.They assure me the doctor and the anesthesiologist will be in shortly, which it seems like they are, until I look at the clock and realize that it's been AN HOUR AND A HALF since they took us down there!
Procedure was slated for 2, they don't take her in until almost 4. When the doctor comes to fill me in afterward, he tells me they took out the port so that he could have full access to the chest. My first thought is, Kara is going to be soooo pissed! But they already did it, so what can I do?
They take me back into the recovery room after about fifteen minutes, and Sarah is still asleep. The nurse tells me she started to spike a little fever, so she gave her Tylenol. That's all she tells me. I notice on my own that Sarah has a peripheral IV in her hand. Which she hates, and keeps screaming at the nurse to take out. Strike 2.
THEN, the nurse we had was forced to take a lunch break, so someone else takes over, and the nurse that's leaving tells the new nurse that she gave Sarah a Tylenol SUPPOSITORY. Now, let's pause for a second. I know it's been a long three years, but I'm pretty sure THING 1 they told me about cancer patients is that you don't ever, EVER do anything rectally because it can cause tearing, and if their platelets are low, they can bleed out that way and you would never even notice! So, on hearing that, I am slightly pissed, but again, they already did it, so it would do me no good to pimp slap a nurse in the middle of the recovery room for failing to read the extra-thick, dog-eared chart that is sitting at the end of her bed for all and sundry to read if they aren't too lazy to pull back the front cover which would probably conveniently disintegrate in their eager little hands the second they attempted it, for all it's so worn. But I am trying to surround my daughter with positive energy, so I let it go. It's over.
Sarah wakes up, notices the IV in her hand, and starts yelling at the nurse to take it out, so they call up to the OICU and speak to Kara, to see if they have orders to take out the PIV that they had no business placing in the first place. Kara tells them to take it out, so they do. They report to her that they gave her 625mg of Tylenol, FAIL TO FUCKING MENTION that they gave it RECTALLY, when Kara tells them that her dosage is more in the 400 range. The nurse double checks, chuckles as if to say, "ooops!" and says the other nurse charted it wrong, that it was 325 mg. I am losing my patience with this Keystone Cops bullshit, but I manage not to go batshit insane in the recovery room. I say nothing, get back to our room. Kara asks if they left the port accessed. I tell her they did not. She gives me this "Are you shitting me?" look, which I return with a look of sympathy. She tells me I have a choice between her accessing it with cold spray, or Melissa, the night nurse (another of Sarah's faves) accessing it with the LMX cream. I ask Sarah, and as she loves Kara but hates the cold spray, and both loves Melissa and the LMX cream, she opts for letting Melissa do it.
Kara goes to hook up her tubes, inspects the ends, then drops them, throwing her head back in an expression that can only be filed under "WTF!" I ask her what's wrong, she says they didn't cap the ends. Being a cancer mom who pays attention, I know exactly what this means, and I shake my head. This means that since they didn't cap the ends, her entire tubing system has been exposed to germs from here to the SSU, contaminating everything, so she now has to change out all of the tubes that were just changed last night. Poor Kara! I see a Starbucks card in her near future...
Mike and Azrael were waiting when we got back, which made Sarah happy, so that was something at least. She is now sleeping soundly, so soundly that her respiratory rate is concerning me, but I believe that I will trust that the machine will wake me if it drops too low and get some much needed rest. I am exhausted, and it's only been three days! How did I ever do this for three years straight?
Tomorrow is another day, and that's just the point, isn't it? As much as today sucked, it was another day with my daughter, and I will take a solid month, year, hell, a century of days like today as opposed to not having her at all.