Week 8 Diary Luke Aemia

Sunday 16th March

Today the doctor came by nice and early and happily declared us to be 'boring'. She wished us a boring day. Ah well.

Maria came this morning, after several unsuccessful attempts to put Jacinta to sleep. She treated kidneys  as well as the usual cancer and white cells plus T21.

After Maria had treated her I finally got her to sleep, noticing that she was breathing quite rapidly. I had noticed this earlier as well, either last night or this morning, I can't remember.  I counted 30 breaths in 30 seconds. I had to go out for a few hours, leaving all three children with my husband, but before I went I mentioned to the nurse that it seemed fast. She was intending to do some obs shortly so she bore it in mind.

When I got back I heard that she'd been given frusemide (a diuretic) because of shortness of breath. She looked fine to me when I got back and what's more, she had been fine for my husband and there were no tears on my arrival. (Usually we have buckets.) This is a big step! I still wasn't allowed to leave the room later on, but if I can leave her asleep or with someone else and know that I won't automatically condemn her to hours of distress, this is good.


After everyone had left she had a bath and on the completion of the bath I noticed her Hickman dressing seemed a little bit loose. It had water underneath it. Dressing change! I tidied up the room and took some dishes to the kitchen.

On walking back I saw a familiar-looking doctor behind me and said 'hello'. Then I stopped and said "Hey, you're from the Women's!", and he was! One of the junior doctors who spent the most time looking after Jacinta in her first weeks with us is now working at the Children's as a Paediatric Registrar! It was so nice to see him.

zzWith a bit of reminding he remembered her history and was really pleased to see her looking so well, though not so happy about the leukaemia, but at the same time not completely surprised. He did say, "we thought that was just a transient thing…", which is rather telling.  Anyway, it was so lovely to see an old friend. It made my night.
Then back to the room, meds and bed. Fairly boring. Or so you'd think….

It's taken a while to find her nurse (handover time) but she's arrived and done her obs. All of a sudden Jacinta's sats are around 90. This is odd. Her breathing is a little shallow. Normally I blog in retrospect, but it's come up as I'm blogging. They're going to get the Dr to have a look. I guess we'll see what happens for the rest of the night. Who knows…..

Monday 17th March

Well, the Dr did come past and have a look. This doctor, who had never laid eyes on Jacinta before, decided it sounded like the beginning of croup. This was mainly based on a slightly hoarse sounding cough she did. We thought we'd watch and wait and keep her on wafting oxygen.

By morning the sats were slightly better when off oxygen and when the sats probe was replaced they were sitting around 99-100 again. Hmmm. That nurse decided to switch everything off. It made sense. It didn't explain the shallow quick breathing though, and the slight hoarseness which was there, despite the croup thing seeming to be a long shot.

Still, we went through the day being fairly much as usual, not giving anyone any trouble at all. Weighed in at 7.8kg - mused that maybe that's just what she weighs now, since she was 7.2kg two months ago and she is meant to be growing. (She's been averaging about 7.3 lately.)

Tuesday 18th March

This morning, when feeding, Jacinta seemed to be quite out-of-breath. She was almost pulling off to breathe, which was reminiscent of the state she was in prior to her heart surgery. They got the Dr to come in and have a look. She wasn't feeding then but sleeping so her breathing was slower and less laboured. The doctor didn't think she was working too hard and couldn't hear any fluid on her chest.
Her weight was about 7.7kg.

There was another episode later in the day where she was breathing very quickly and shallowly and she  was very mottled-looking for a lot of the afternoon. Still, she was the same. (Still, I was concerned.) Nonetheless she got off to sleep and slept the whole night through, pretty much.

Wednesday 19th March

Today she was working quite hard in the breathing department. The Dr came in and had a look and agreed that she was working quite hard. She still didn't sound overloaded, but her weight was 7.9kg and she looked out-of-breath. We got her a dose of frusemide. They assumed that the fluid going constantly in on top of her feeding was overloading her gradually. Can't wait for these neutrophils to move so we can stop the antibiotics! (Still not much in the white cells department, and they're only leukocytes.)

So I'll keep monitoring. It worries me slightly that she doesn't look overloaded with fluid. If it's not fluid then surely it's just the heart….. Still, we'll see.

On the plus side, her weepy nappy rash has a new friend in the special powder that goes on and makes a dry surface for zinc-based creams to stick to and create a barrier! Hoping the weeping goes from half-healed to fully healed by tomorrow.


Thursday 20th March

Well that was a bit of wishful thinking…

Anyway, it's reduced by half again.

So today we looked like we were overloaded even though we couldn't hear anything. We started on a daily dose of frusemide (lasix), the diuretic.  She's more comfortable now after a few big wees. Her haemoglobin was also at 79 so she was given some more. The nurses had a training thing last week on blood and the processes through which it arrives at the hospital. Apparently the value of a bag of red cells is about $350! I think platelets are more like $500. They don't pay this unless it gets wasted. (The government pays if it gets used.) Thing is, the blood bank makes up all these massive bags which are single use and they don't want to give a big bag to a tiny child, so half of it goes in the bin, and everyone comments on what a waste of blood it is!

Last night was a crazy night. She woke with a pooey nappy about midnight and I took her to bed with me, to ensure a better sleep - or so I thought. She either didn't sleep or it was very patchy. At 3am we emerged from out room to make a cup of tea. Our nurse for the night (one of the new graduate nurses, who is, incidentally, one of the smartest people on the ward) offered to sit out at the nurses' station with Jacinta for a while so I could get some sleep. I was doubtful it would work, but happy to try anything since I had my middlest arriving at 9am or so and was looking at about 5 hours' sleep.
She made it about 2 metres up the hall and Jacinta wasn't playing ball so within 60 seconds they'd arrived back in the room. I decided to try properly to get her to sleep so I rocked and she actually went down quite easily. I find that a good cry, for better or worse, seems to result in faster settling. I took her to bed with me, which was good because she woke every hour or so til 8am.

Anyway, tonight she was looking quite ruddy - that point beyond rosy where you know they've had enough red blood cells for one day. She was super tired but grizzly. It seems almost as though she has a bit too much and it's uncomfortable somehow. Maybe you get wired with too much red blood. Anyway, after an unsettled sleep from 7-8, during which she grizzled every time I put her down, then a period of wakefulness when I didn't let her sleep, she finally went down after another feed about 10.
She didn't drink much today - either her tummy or breathlessness were stopping her it seems. She didn't eat anything really either. Every bit of food was thrown away.

So she's still asleep now and I'm fingers X she'll stay that way!


Friday 21st March

I can't exactly remember what happened in the end, but she was connected and woke up and I had to sit up in the chair with everything. She went to bed in my bed eventually so I think we ditched the oxygen at some point.  I didn't get much sleep!

Today we had Bactrim, since it's Friday. We had lasix added yesterday as a regular dose and there's now a potassium deficiency which means the disgusting potassium supplement. One nurse today said he's never tasted it but he's had it spat back at him, so he knows it's not tasty! I do wonder how they can make salt and potassium tablets that are virtually tasteless and dissolve in the mouth but can't make a palatable single potassium tablet or liquid. It's a big dose too - about 5ml!

Anyway, we had lasix, tazomoxifen (antibiotic) and potassium all going in so it felt like every half an hour the pumps were going off and I'd be pressing the nurse call button.  No wonder the day flew by. We didn't have the same slightly serious patches of breathlessness that we've had the past few days. Possibly they're less serious because we know there's a dose of diuretic soon.

Just as we were going off to sleep, siblings arrived and announced they were kidnapping me and taking me to Luna Park, our quaint and super-fun amusement park by the sea. Jacinta was super happy and surprised to see her sisters and her Daddy and not super happy that she wasn't coming too. It was a bit sad that she couldn't be there, but it was so very therapeutic for the big girls (and us) to have fun with both their parents at once.

It was also World Down Syndrome Awareness Day. It was all over my Facebook news feed. I don't have much more information to give you all than I'm already giving on a daily basis, so I don't really need a special day to raise everyone's awareness. I think Jacinta has the respect of a lot of people and that's the purpose of being aware of a condition. If Jacinta is people's definition of Down syndrome then that's a good thing. (So long as Jacinta is not defined by people's erroneous assumptions about Down syndrome.)

I have to say I don't really like the odd socks thing and I won't be doing that. I don't like to raise awareness by using something that ordinarily shows you're not operating at 100%. Showing up to work with odd socks would gain you some degree of ridicule. It's a duffer who puts odd socks on. Either they didn't notice or they had no clean pairs. Either one is not the doing of a capable person.

I finally found something that explained that two socks placed heel to heel looks like a chromosome karyotype. It's a bit of a stretch for me, particularly since it took so long to find out the reason.

Anyway, I'm all for letting people know that there's a new definition for Down syndrome. I'll just keep doing it my way, one day at a time!


Saturday 22nd March

Well, as has been the pattern lately, as soon as I was getting ready for bed Miss J woke up. It was midnight and I was really really looking forward to bed!!

In my less than brilliant (sleep deprived) state, my sleep-inducing ideas were pretty thin on the ground. I was scraping the bottom of the barrel and finding I'd cleaned it out already. We tried for a couple of hours then watched the latest episode of Dr Blake's Murder Mysteries. She quite enjoyed it.

Finally she was so wrecked that a bit of the old 'spin around in a circle til their eyes shut' did the trick and she went down without argument.  At 4am. The main difficulty had been that she was on the sats monitor and couldn't reach the parent bed. Normally I just take her with me and feed her to sleep with a cuddle. Works every time.

As it was she was taken off the monitor eventually so when she awoke in the wee hours I took her back to bed and we slept in til 11. Thank goodness! By the time I was ready to make toast for breakfast the lunch tray had arrived, so she had lunch for breakfast, naturally.

They gave her more things to take orally, because clearly she didn't have enough. (Or because it was medically indicated…) The antibiotics lead to fluid overload which required diuretics. The diuretics have now caused potassium loss which means she takes oral potassium twice a day (which is 5mg - lots, and really strong tasting) and another diuretic which saves potassium but is less effective as a diuretic, but at least tastes alright. It can't be done intravenously.

So now we're doing about 10ml of meds by syringe with breakfast. Not a fun time when she takes about .5ml at a go.

We had a nice day, with siblings in today. There wasn't much happening, just antibiotics and diuretics going in. Platelets today too. Waiting, waiting. Fingers x she stays asleep…...