Once again we can look back and ponder ‘another day in the life’ (that we’re thankful is over!).
We started the day with a cranky and rather apprehensive little girl. I drove her in to the hospital for her second day of testing. The whole way to the hospital Violet displayed multiple personalities, ranging from singing happy ballads to groaning to lashing out in anger. (She even complained about not having breakfast which was rather comical because breakfast for her only happens once in a blue moon). Despite leaving 30 mins earlier than usual, we arrived late and checked in for her 3 tests for the day (MIBG, MRI and CT scan).
These tests are not something new. This is her 4th round of these tests since diagnosis so you’d think she’d be an old hat. First up was the MIBG which looks for any ‘hot spots’ in her bones. This involves lying still between what I can only describe as a sandwich press. It gets right up in your face until you think it’s going to hit you and then stops and moves around your body (claustrophobic anyone?). This is while they have her feet taped together and have her wrapped so tightly in a sheet that you might as well call it a straight jacket. This goes for just over an hour each time (done twice, over 2 days). Today, while this is happening, I am pumping contrast fluid down her NG tube for her CT scan. This is great stuff. 450ml of fluid for her 6-yo bladder to deal with which makes her feel sick and gives her diarrhea… every time. (Just a little something to look forward to later). There is NO way to get this down her throat without the use of her NG tube, so to extend the merriment they give me 10ml syringes to administer it ’cause they can’t find any bigger ones.
By about syringe 25, she is sobbing, feeling sick, tired and emotional and I am trying to keep her still so we don’t have to restart the scan. Enter the nurse who informs me that they need to give her a cannula in her arm in order to give her the IV contrast for the CT as they can’t use her central line [insert long-winded explanation on why this torture is warranted]. Now you would think my brave little warrior would be used to needles by now. No. Don’t get me wrong, we have had times they have regularly inserted insuflons (valve inserted in the muscle in her thigh so we can administer growth hormones without turning her into a pin cushion) without so much as ice. But tell her you want to put a needle into a vein and she turns into the Tassie Devil on steroids. (My sincerest thanks to the trainee doctor in ED who ruined her for life after butchering her arm while trying to insert a cannula when she was first diagnosed. Before this, she was a dream).
So the scan finishes, Craig arrives and we spend the next 10 minutes in operation ‘Major Distraction’, stealthily pushing the remainder of her oral contrast down her tube. In between moments of distraction she yells as us to stop because she is feeling sick and her belly is full. Our favourite nurse now comes in with the numbing cream for the cannula insertion and we have to break the news of ‘impending doom’ to Violet. The nurse tells us how amazing she is at inserting cannulas and reassures Violet that she won’t feel a thing. We have to hold Violet down to put the cream on her arm.
They usher us off to a room to give a cream some time to work. We’re there for all of 5 mins and Violet announces she needs to be sick. Of course, they’ve put us in probably the only room in the hospital that doesn’t have sick bags. She vomits all over the floor. They then move us to a new room (minus the sea of vomit on the floor). Our very confident nurse is continually reassuring us of her excellent abilities. We finally calm down our anxious, sick and trembling child and the nurse tells her it will be over in 5 seconds and that she can give her a score between 0 and 10 when she’s done. Much negotiation and 15 seconds later, a haematoma the size of large marble protrudes from Violet’s skin – minus a cannula. Violet loudly scores her a ZERO (in her best Tassie devil voice). I would have given her points for her amazing acting job, as even though she was clearly freaked out at the size of the haematoma, she kept a her voice even while staunching the blood flow.
(Before you berate this nurse for this small but significant human error, I believe my nervous daughter just may have bent her elbow ever-so-slightly at just the wrong moment…) Attempt no. 2 is a success, scoring our now shaken nurse a 100/10. I later sit down with the nurse and tell her that there are no hard feelings (after all we are but mere humans) and prescribed her a stiff drink at knock-off.
(Note: I have since spoken to the oncologist he has agreed we will not be inserting any more cannulas for CTs.)
Violet undergoes the next 2 scans without a hitch. Winning. Finally. I can smell freedom and my lunch. Next stop is Oncology outpatients for an unscheduled visit to confirm the time of Violet’s bone marrow aspirate (BMA) the next day. (BMA is where they knock the kid out and stick 2 big needles into their pelvis to sample their marrow then wake them up without any pain relief). Appointment confirmed. I question the nurse at the desk about one of Violet’s lumens (1 of 2 connections on the central line that go into Violet’s heart) that appeared to be blocked the previous day and had some residual blood in it. I am told this needs to be attended to today. Yay.
I am happy to say that the drama stopped there. With an expert ‘flush’ the nurse had the lines working perfectly. There was no need for extra drugs to clear the line. Of course the day couldn’t end there. We had holes in arms and spilled blood and many tears throughout the day so an incentive/prize/bribe/reward was required. Yes, Violet got one too. 🙂