Week 7 Diary Luke Aemia

Sunday 9th March

So it's our 7th week of treatment. We're at Day 14 of this course of chemo. Day 56 of our relationship with Level 2 of the Children's.
Last course I was told that day 10-14 is the key time for neutropaenia. I was watching out for a fever during those days. It arrived on Day 14. This time I'm not looking out for a fever. I'm also not expecting the counts to go up in a hurry. It's looking like we'll need platelets tomorrow. We're in the thirties.

We were definitely hearing from Miss J's teeth today. Lots of knocking but no-one at the door though.
Everything's looking good otherwise, temp is sitting just under 36. Sats and BP all good. Smiling away. No probs.

Today Maria came in again. We've finally managed to be in the right place at the right time. I also introduced her to another Mum here whose son is a bit younger and doing the same treatment for the same thing. Hopefully this won't cause issues with her going from one room to the next, making house calls!

Not much else to report. Yay!



Monday 10th March

So today is that lovely public holiday they call Labour Day. That awesome day off which allows us to go and watch the Moomba parade (google) - if we're not in hospital!

Miss J's doing as well as usual. She looked like her temp might be heading up but then it was back down later so that's all fine. The assumption is that she will get a tamp at some point, though last time it was day 14 so we're doing just fine!

Her platelets were down to less than 10 so we're having a transfusion. This combined with the siblings being in today means that little Miss J is not in bed! I expect we'll look at sleeping some time soon.

Otherwise nothing much to report and let's hope it stays that way!


Tuesday 11th March

Today we had very little going on. Jacinta had something gurgling away in her tummy, which I suspect was the tiny bit of spaghetti she tried. She's not meant to be that sensitive to wheat, but I think she's better not to have it anyway. It's hard to avoid on the hospital menu, however!

They also took a swab from her nose, since it's been runny on and off for a week or so.

She was very unsettled at bedtime. It took about 2.5 hours to get her to bed. So much for the early night I had planned! (And the sneaking off I was going to do.)


Wednesday 12th March

Well, today was the day we were waiting for. It all began in the usual way, we got up and faffed around, pretending to be well. The nurse came in to check her temperature, which is the only thing they were keeping tabs on more than once a shift.

37.7 it said. Really? She didn't feel that hot. In fact, she felt quite cool. Tried again. Same thing. Tried a timpanic (ear) one rather than underarm. 37.7. It really was 37.7 (She's been reading 35.8 most days)  The cutoff for starting antibiotics is 38. (Though the last Fellow actually said that because Jacinta reads low she'd be starting them at 37….) It took an hour or so, then she felt 37.7.

Checked again once she felt hot and we were at 38.3. Dr came in, made the call. Started the ball rolling. They had to find a syringe driver (the kind of pump they use when they're not using bags of stuff, just little amounts in a syringe), which was a challenge because they had begun updating the software on all of them. They finally found one and then had the conversation about how they were meant to use it, since they'd had training on it that morning and couldn't remember what to do.

They decided to override it and use the old system on it. Easy. They also mused that they might just do this every time in future……except it's now hospital policy to use the new software and they'd be in trouble!

So after much to-ing and fro-ing we had two drivers on a pole with antibiotics going through.
The doctor made an interesting comment. They do explain things again each time they happen, which is nice. You pick up extra bits of information the subsequent times. The thing I picked up this time is that the chemotherapy drugs can affect the body's ability to regulate its temperature. That's interesting! He was dubious that the temp was caused by an infection and said they'd check to be sure, but that the cause could well be just the drugs.

So she's on the "antis" until her counts come up. (I'm sure they call them "ABs" up in cardiac…) Oh well, it was nice to be unattached for as long as we were. She was then feverish pretty much all day and night. I wasn't allowed to put her down. If she was asleep she would wake up to remind me that I wasn't allowed if I thought I might just get away with it.

Eventually I cracked it at midnight and flopped down on the makeshift bed, threw a pillow and a blanket on and slept in my clothes with her next to me. I didn't write this blog on Wednesday!


Thursday 13th March

So today we woke up much cooler. It was dressing change day, which is never a barrel of laughs, but isn't up there with having a line put in either. Things were pretty quiet all round. The antis continued, the bloods for culture continued. The more frequent obs continued (because of the drugs).

My middlest came in so we had some things to do, like go to kinder and go for  a walk with another little girl in here who's 4. She also took the opportunity to use her stamps on the walls and slather her hair with strawberry body butter. I then took the opportunity to get all the knots out of her hair while she sat and complained.

Miss J still wasn't a fan of being put down today so it was such a fabulous relief when, at about 6.30pm, I finally had my sleeping child in her bed without any part of my body in contact with hers.  Having had no downtime whatsoever since Tuesday night, it was a welcome relief! I went downstairs - the penultimate indulgence. (Leaving the building is the ultimate indulgence.) And I'm planning an early night….if she doesn't have other plans. Fingers X!

Friday 14th March

She had other plans. Still, I decided to just take her to bed like last night. It doesn't result in a brilliant sleep, but at least it results in some.

Today we were rocking along with significantly fewer red blood cells and platelets. You can't get any lower on the white cells.  They transfused haemoglobin and by the end of the day there was some mottled skin, increased breathing and grizzliness. They were waiting on ok for the diuretics, though her weight had gone up a few hundred grams over 24 hours. She also had very runny poos, most likely due to the antibiotics. Her bottom's quite raw after about 5 of them in as many hours. Here's hoping it gets a chance to heal overnight.

She managed some sleep in my arms today and went off quite enthusiastically tonight after her last poo.
She stayed asleep nicely while I stole away to record some music for the wedding we can't get to.
Still asleep, so fingers X there's a bit more alone time in there!

Saturday 15th March

Today was fairly uneventful. I think the most eventful thing was the querying of the 5mg of Bactrim which arrived in place of the usual 2.5mg. "I don't know why I did that!", exclaimed the surprised nurse. We're clocking up a small tally of victories against human error, which is more satisfying than alarming. It's just a parent's job to make sure these things don't happen, because they're bound to here and there, in my opinion.

We had siblings running around with other patients most of the day today, and Miss J got a little sleep. She went down early though and we managed to sneak off for an evening out with the siblings' favourite aunt-to-be.

While I was out, around 10.30 I had that old warning signal known as "my boobs are hurting", which indicates the baby is about to wake. I kept my eye on the phone but nothing happened. When I arrived back around 1am, thinking she must have slept through, the nurse on overnight told me that she did actually wake up but resettled on the nurse's shoulder without a fuss. This is unprecedented for this admission!  Definitely a step in the right direction. (And I'm sure I need not mention that when I asked the nurse what time that was….)