Last Tuesday, Jacinta was recovering nicely from surgery and I was getting her dressed, when one look at her scar told me she needed to be checked in Emergency.
What had been beautifully scabbed was now scab-less and weepy. It seemed the edges were moving away from each other rather than closer together. I grabbed my bag and a snack and headed out the door, attempting to arrive soon enough to be out of there and home for school pickup.
Now, we've done this before, twice. Once after the first surgery when some stitches must have stayed in and got infected. They gave us antibiotics and sent us home. Once during her admission from the second surgery when the end of the wound looked at bit infected. They took her into surgery and did a debridement (where they clean out old dead or yucky tissue - ewwww).
It didn't seem too bad to me so I was expecting a dose of antibiotics and to go home again. The surgeons had other ideas. They said they didn't think it was infected, but that we should stay overnight and have a look in the morning. I rearranged several meetings and a highly anticipated outing for that night. (Thankfully my eldest enjoys the ballet too...)
"Ah well", we said, and upstairs we went, expecting to be sent home the next morning.
The doctors came round and when they opened their mouths to say "you can go home", they must have got confused because "I think we'll take her in for a clean, if that's ok with you" came out instead. Every single person looking after us from that point had their money on us leaving that morning - maybe the surgeon was running the book!
So then we were fasting, and we were due for surgery around 3pm.
Now, due to issues when she had her surgery in 2015 Jacinta has a note on her file that she reacts to morphine and fentanyl. These are both opiates. Morphine does the opposite of sedate her. She's firing on all cylinders after a hit of morphine. Fentanyl makes her inconsolable, not want to be touched, scratch everywhere, pull out wires and tubes. It turns our perfect patient, very cruisy young lady into someone who is having a serious meltdown, for several hours.
This is what happened in 2015. It was observed primarily by me. They apparently gave her some again in ICU this time and the reaction was less severe, but still there. I don't know whether or not they attributed her changes to the drug since they don't know her normally. I do know that when I mentioned it was the fentanyl, nobody seemed particularly interested.
Anyway, when we reached the pre-op area they asked what her 'allergies' were (since she has a red name band) and when I mentioned the issue with fentanyl they said 'we'll be giving her fentanyl today' despite what I said. Sometimes there are issues with drugs that are used, where certain protocols are followed and changing them is complicated, so if they make a call that it needs to happen, I don't kick up a fuss since I'm not a fan of complicating things and inviting human error.
So she went off, it all went well, and then she came back.
Again, super thirsty. Wouldn't eat. Inconsolable, no hugs allowed (except from Daddy while he was there) scratching everywhere. Rubbing her eyes. Pulling at all the leads and her IV drip in her hand.
In the end I had to call the nurse in and request that some of the leads be taken off, since her heart rate was up, her respiration rate was low and these were not even right because she was nowhere near still, and pulling off the leads. I think she had ripped the wires out of the sticky spots and was removing her sats probe as fast as I could put it back on. It was absolutely pointless trying to monitor this, when the stickers and probes were part of the problem.
Thankfully the nurse was willing to take off as many as she could. She had to follow certain monitoring guidelines, but could see it was futile to keep everything on. I pointed out that Jacinta was seriously attempting to remove her IV. She had wanted to keep it in just in case it was needed, but made a judgement call to take it out, finding it was already half out when she did remove it.
Finally, about 7pm Jacinta settled down and had something to eat. The ward doctor had been called and she agreed with the nurse that it was an allergic reaction and it wasn't safe for her to be given it. They gave her oxycodone (a cousin of morphine) and some zyrtec to help her settle and she stayed awake, exhausted but wired, until midnight. Looks like she's not a fan of opiates across the board (she's had zyrtec before).
The doctor started paperwork for Jacinta's reaction to be registered on record as an adverse drug reaction, which means that if anyone tries to prescribe it (which is all totally computer generated now) the computer won't let them. I think several staff couldn't quite believe that she was given it in the first place, and it felt weird to be the one being philosophical about it all.
But it's a bit of a sad fact of hospital life I suppose, one which the staff don't often see. If you as a parent observe something happening with your child, it is rare that someone will take your word for it on the first instance without either ignoring it or questioning it. I usually takes several occurrences of a phenomenon for enough staff to observe it and do something about it. That's par for the course. I was surprised that the staff were treating it so seriously, until I realised that they had seen this and it had happened to them (particularly the nurse who barely left our room) and they had feelings and opinions about it.
I hear it was reported through internal channels. That was mentioned the next day when someone asked if it had been. Again, I was a little surprised it was getting so much attention, when it's no different in my mind from the time she was given a drug that should have been ceased and her BP crashed overnight and she had a MET call, or the times I queried drugs or doses being given and the nurses said 'oops, thanks for that'. It's just part of hospital life. We're a team and if I do my job and you guys do yours, we have the best outcome. Still, I appreciate the attention it was given. This is one of the premier children's hospitals in the world and they do pride themselves on doing things properly.
And they asked us if we wanted to go home.
We said, 'yes!'