Friday, 7 February 2014

Week 2 Diary Luke Aemia

Mon 3rd Feb

The new doctors all started. They're on rotation and they've all done musical chairs. Ours is Scottish and I don't know his name. He did say some magic words, "you'd never know you were sick", after examining Jacinta for a few minutes. Then he said something else and I didn't quite catch it. I normally don't have an issue with UK accents, but his is super thick! (It was to do with monitoring etc.)

We revisited the early bedtime that's mistaken for a nap this evening. Accordingly, Jacinta didn't get to bed until about 10pm. At least when this happens she doesn't wake up again all night!

Tues 4th Feb

Today Jacinta was 'brilliant' and 'perfect' all day. She may need platelets in the next day or two, but who doesn't?

She weighed a little on the low side and had low BP so they're talking less of the diuretic…which we always like!

I left her for a few hours with her dear aunty-to-be, and she did really well. She's been used to pretty much my sole company over the last two weeks, so I wasn't sure how she'd be. It was good for my middle one though, who started kindergarten today, and I'm glad that I went even though there were a few tears towards the end of my absence.

We saw the dentist, who's all about disinfecting her mouth, my mouth, anything that might possibly go in her mouth; the occupational therapist who thinks my suggestion of a routine is a good one and thinks her ability to play is "really, really good!"; the oncology consultant who doesn't mind getting down on the floor and asking Jacinta how she's going and how her day has been - and listening to her answer; several nurses who dropped in purely to say 'hi' and smile and wave and clap with Jacinta for several minutes when they had other patients to attend to….and a lovely present of crafty activities for the older girls to do.

The nurse took off the dressing from her jugular vein. It was almost perfectly healed, which is nice. I don't think she believed us that we weren't going to cause her pain, but it was pretty easy. I keep thinking her hair looks thinner, as though the underneath ones are going missing and her scalp is showing through. Hard to tell.

Lovely bath, reasonable bedtime and a dream feed. Pretty good day today. :-)

Wed 5th Feb

Today my middle one came in and we made good use of the crafty things which arrived yesterday.
Jacinta continued to have all the right numbers - even though it proved very difficult to get a blood pressure reading under 120 at times, due to her being so small and the planets being out of alignment.

The nurse came in to give her the dose of diuretic and I queried it. We did the above and found a lowish BP, then weighed her and found she was about 500gm less than when she came in. She decided to delay the morning dose. By lunchtime the Dr had decided to scrap the diuretic. Lucky move since she was looking a bit dry by then, so we had a crack at the new cup full of water and had an extra breastfeed. We weighed her later and she was much closer to the right weight and seemed much juicier. Phew!

If I learned one thing from our last hospital stay it was never to let a nurse do something you think might be wrong, no matter who they are or how intelligent. Too much diuretic got us into serious trouble last time so I'll be staying on top of that one, in particular.

Jacinta keeps on looking super healthy. No-one's complaining!

Thurs 6th Feb

A year ago today Jacinta was discharged from the Women's and sent back to Box Hill. Little bit of trivia for you!

Well! You know that thing about Jacinta looking super healthy……
About 2am - not long after I'd written the above, Jacinta woke up for a feed. She felt quite hot, but this heat dissipated. I put her back to bed and went back to bed. She woke again about 4, needing a feed. She felt quite hot again. The Oncologist had said last week that since kids with T21 tend to measure on the low side for temperatures, we'd be starting antibiotics if she had anything above 37. This stands to reason since a good temp for her on her first NICU stint was anything above 36 and if you got it above 36.5 you were doing well.

Still, during feeding her temp went down again so I let her fall asleep there again. About 6am she woke up again, hotter still and quite grumpy. The nurse came in and I told her she was pretty hot. 38.9 degrees hot, in fact.

Pretty much a no-brainer. We're on antibiotics. She's been quite grumpy all day, with small patches of less grumpy here and there. The play therapist AND the music therapist dropped in today, so we had a lot to do! Pity it was not her best day, but she made good use of the music therapist singing nursery chillout songs and she relaxed for a bit.

We also got a new bunch of some kind person's platelets and some other kind person's haemoglobin. What with having the music therapist today and all, I kind of made up a new song. Done in the Anglican tradition of taking a tune and assigning words to it, I've done it to the tune of "He's Got The Whole World"


I've got hae-moglobin in my blood
I've got hae-moglobin in my blood
I've got hae-moglobin in my blood
Haemoglobin's in my blood.

And there's a little bit of platelets in my blood
Just a little bit of platelets in my blood
I've got a little bit of platelets in my blood
Haemoglobin's in my blood.

Sorry about that. It'll be going round and round for days.

Friday 7th Feb

So we're still on antibiotics. We did a big blocked-up poo today. I swear she works as hard as a woman in labour sometimes so I know how she feels when she's finally got it out. Feeling slightly mean because earlier in the week the nurses kept assuming we were going to give her a laxative, which seemed unnecessary since her last two poos had been perfect. She'd only been a few days between poos - which for breastfed babies is nothing. I kept saying no. Maybe I should have said yes…. Ah well, it's done now.

The fever has subsided too, so we're back to square one. We're looking much more rosy and she seems much more herself, though she does have the black circles under her eyes a bit. I wonder if it's the antibiotics. Hmmm. I asked if I could give her probiotics and to my surprise the doctor on today thought it might not be possible. They're pretty happy with things like that usually, but he says that with the immune system so incredibly nonexistent, (I saw her levels and she pretty much doesn't have one.) even good bacteria has been known to cause trouble.

Today she had a good lunch of hot chips and sausages. Really munched away nicely on those and didn't feed very much, except at bed time. Big sisters were in tonight (yay!) and so it took about 2 hours to get Jacinta to sleep. Got there in the end though. I realised today that yesterday was Jacinta's 13 month birthday. Oops! Happy Monthday Jacinta!

Saturday 8th Feb

Goodness! It seems we've given up sleeping for the rest of tonight!
We went off beautifully by 8.30, once the nurses had stopped using the machine that beeps loudly every 10 minutes.  I went out for a few hours until about 12.30, at which time she must have realised that I was back and woke. I gave her a feed then she dropped off & promptly woke as soon as I put her down. We've repeated that about 3 or 4 times again. Now I've put on the music in the hope she'll do it all herself. It's 3.30.

So there was nothing much to report today. We dropped some antibiotic, which I think was because we were doing very well. The Hickman's oozing slightly still, which is probably because we pulled it yesterday by accident. No big problem though. I may well keel over as I write. So tired…………………………..

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