Monday, 19 December 2016

Vale Jules Watson

Sometimes I feel compelled to write a reactionary post. Usually these are for venting purposes.
Once or twice, I've felt compelled to write about a loss, and this is one of those times.

Back in early 2015 a friend of mine shared a blog post, from Five Fairies and a Fella
I don't remember exactly which post it was, but from Jules' turn of phrase and her absolute spunky fighting attitude, I was instantly in her corner on her fight to live, when all stats said she wouldn't.

Jules and I have a few things in common, though my fairies are younger and one fewer, we each have a youngest with a Trisomy.  A mother by occupation, who had something to say, with words as her instrument and who wasn't backing down from the idea that she would just survive, even if it was not supposed to be possible.

What I loved most about Jules is that from all I have read it appears that she was very much in the same place I am just a couple of years ago, yet she decided at one point not to be scared anymore. She decided on what was important to her and began, by ticking off items on her bucket list I suppose, to actually live her life the way she had always wanted to.

She obviously began blogging, she threw herself into her writing, finished her tertiary studies.  By the time I had been following her a year, she had beaten the odds several times, not died at least once, and published a book - travelling the country to promote it. (It was such a pleasure to brighten her day during one rough moment by sharing a picture of her book on display at my local library.)

Of all the people I have met on Facebook and never met in real life, she is the one who will stay with me, because she left an indelible mark on me. She could have been me, and when you have so much in common with someone you feel what happens to them in such a real way.

Because of Jules I will be working on creating memories for my children while I am fit and well.
Because of Jules I will write down my thoughts for my daughters while I think them.
Because of Jules I will grant importance to my own dreams and goals and start living the life I actually want to live.
Because of Jules I will not let something go if I sense there is something not right with my body, but I will get it checked, because not being around for my children is a much scarier thought than any diagnosis might be.

I am sad that I never got to meet Jules. I really think we would have had a good time.
I feel for her Fella and Fairies, so much. Words seem empty, when trying to convey an understanding of the emptiness that Jules' loss must have left in its wake. I send them all the love I can muster.

And so Vale Jules, you defied the odds so many times. If anyone could beat it, you could. Maybe no-one can. You grabbed life by the horns and lived that life like it was going out of style. You will be remembered. Not just by those who knew you, but by those who would have liked to, if things were different. You made a difference and you left your mark. Fare well.

The post-surgery update.

Well, we made it to Reception J on time and managed to arrive with a fasting, but not uncomfortable Jacinta.
It's always better to have sisters there before surgery because you can giggle and have fun rather than sit there worried.
One good thing about having done it all before is that you have pretty good prediction on how long it will all take and when you'll be going in. The first time she had heart surgery I thought 7am meant a 7am op - or thereabouts. Ha! Not so much. More like 8.30. It's handy to know that when you have to keep kids entertained.

So we took family photo with Jacinta and me gowned up to the nines. Then I took her through. It was when we were in the theatre that she saw the warming thingy on the bed, looked around and got her bearings that it all got real.
With a shake of the head that clearly said,"uh-uh" she indicated that she knows how this goes. To her credit, when I said,"yes, we have to", she settled on my lap watching Peppa Pig on my phone and let them put the gas mask on. One thing has changed,  they used to flavour the gas with strawberry or chocolate topping. Now they use lip balm - grape in this instance, on the anaesthetists's recommendation.

We went off to fill in the time. Apparently orange pancakes are now a thing and The Secret Life of Pets is too scary for some children. I wound up with more than one extra on my beanbag in the cinema downstairs.  Water tastes good with lemon, strawberry and cucumber infusion. The surgeon called as we were finishing lunch. Now he had said he would finish sometime early afternoon. He always SAYS that, but then I either get a call saying it will be another few hours, or I don' t get a call til late afternoon, because it was tricky and it's not perfect bit it will be ok.

I admit, when the phone rang at 1:26pm, I freaked out a bit. I was expecting to have to kill a few more hours, and an early phone call could not be good news.

But it was! The surgeon said it was easier than expected and the result was perfect. This means that the membrane should not grow back again. For context, I have never before heard the surgeon say the word 'perfect' without the word 'not' in front of it. I think he also said the word 'pleased'. These are not words he throws around with gay abandon.

She got back to ICU by about 3:30 which is the earliest ever and they started talking about waking her up that night, which never happens. This is how other people do cardiac surgery!
By the time I came in the next morning she was awake enough to see me and they had 'extubated' her. (Taken out the breathing tube) She wasn't super happy about life, but hey, she had just had her chest ripped open and bones broken and wired back together. That's fair enough! I did notice however that she didn't want to be touched or looked at, which is what happened the last time she had Fentanyl. She was given it this time too.

Then things happened very quickly. They said she could go to the ward that day. We were waiting, not on her recovery, but on a bed in the ward.  The first thing she told me was that she was thirsty, and she drank at least a cup of cordial (you go with whatever goes down in some scenarios) in about 2 minutes. After a few hours she had come out of the Fentanyl grumps and was eating food. She scratched at her chest a lot. She pulled out her oxygen prongs. Lucky she didn't need them anymore.

This was in stark contrast to her first ever surgery, where they gave her a day off and just let her rest. Both previous times she was still well under sedation at this point. Now she was up and about. We found a good spot that was comfortable, with me on the bed under her. I'm not sure how usual this is in Intensive Care,  judging by the surprised and amused looks we got from passers-by and visiting doctors.

We went to the ward that evening and despite her disagreement with changing spaces, she just got better. Every few hours they took things out. By the Thursday they had taken out her pacing wires and drains. This had never been done with her up and about, and it was one of the most harrowing things I've ever had to participate in. She was fasting for a very long time, because they wanted to use heavy sedation, and this meant she went in hungry and thirsty to do a thing which scared the hell out of her. Then for the rest of the afternoon while she wanted to sleep she was made (by me) to go downstairs and do a chest X-ray (because we had to).

 By the end of all this, we just wanted to go home. She was over being touched, she had pulled out her NG tube which meant oral meds from then on, she disliked almost everyone who came into the room. Another room change meant we were in the low maintenance section but she did not agree with changing rooms again. Thankfully a Skype call to home meant she could relax again.

And then, on the Friday, they sent us home. I think I was packed before the doctors even came around.  It's interesting, the more we do hospital, the less we feel the need to be there. I remember the first time she went home I was a little nervous about how safe it was for us to be looking after her so soon after surgery (two weeks). Now, I am so over the nights spent in hospital, where the nurses pretty much have to do obs overnight, which almost always results in broken sleep for everyone, that I would rather look after her four days post-surgery by myself at home.

 I know that she will sleep better, will feel happier, and will have the food and drink she's used to plus the Peppa Pig DVD and whatever else she feels like doing to hand. You just get better faster at home. Everyone who knows hospitals agrees that if you don't need to be in hospital, it's better not to be there.  I did have some messages from friends saying 'don't rush home, make sure you rest', but the chances of rest are so much higher at home.

And you can drive to the mountains at your leisure and visit the Chocolaterie and Ice Creamery.....

Loooong trip to Emergency

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!'