Monday, 24 February 2014

Week 5 Diary Luke Aemia

Sunday 23rd Feb

I didn't have much to write today and was so tired I didn't write it at all and I'm doing it on Monday!
We went out to the waterslide park and had as much fun as you can have while staying out of the water!

Noticed a bit of a rash on her tummy which seems to be from where the adhesive was taken off. I didn't think she was sensitive to either of the things used, but I guess there's a first time for everything.

Monday 24th Feb

So today was spent getting as ready as possible for our admission tonight.
We collected big sister the eldest from school and it took so long we arrived home with dinner only ten minutes before we were meant to leave. Luckily the lead time on the admission was two hours so there was a buffer and it didn't matter that we were 15 minutes after the stated time.

We're back in, in a sort of shared room. It's almost the same as a single but instead of a wall with a desk and your own bathroom, there's a curtain and the one desk and one bathroom in the middle, then the curtain on the other side then the other person's bed. It's as separate as you can get without walls and it's probably about the same as other hospitals without sound proofing, but you can hear their telly and their conversations. They're talking another language so I don't know what they're saying.

We've found three friends already from last admission. There's another little boy with T21 and AML on the same protocol but 2 weeks behind us. He's 8 months. We're next door to him. The 8 year-old girl who enjoys playing with my 6yo is across the hall and next door to her is the little boy we've seen in kinder.

So we've started round two of our chemo. I guess this means the echo was fine. I guess it also means that she's responded well to the chemo. We see the big Dr tomorrow so I'll find out then. She's having a higher dose of Ara-C this time and also Asparaginase (I think!). It's given over a couple of days this time and there can be conjunctivitis and massive allergic reactions, so we'll see how we go. I'm used to it generally being no problem, so I have to remind myself that we might have some of these things go on! I was all ready last time and we had no mouth ulcers, no nappy rash, one tiny fever, no illnesses, no heart problems (except for the fluid overload, which was not exclusive to the chemo). Touch wood we breeze through, but we'll see.

Miss Jacinta did not want to be in tonight. When we got here I tried putting her on the cot and she wasn't having it. Finally after about half an hour I got her there to get her changed into her pyjamas. There was nowhere else! She was exploring the cot eventually and started really reaching out from a sitting position and looking like crawling was a possibility. She also started grabbing the side of the cot and pulling up….someone's been practising! I'll have to keep those sides right up now.

In the car just before we left home, Jacinta started saying "ah ah ah ah ah…..tchoo" and it suddenly dawned on me - she was pretending to be her sister pretend sneezing! This talking thing is tricky to spot when it's so inconsistent!

So they're putting eye drops in now as a preventative and they'll be doing it again at 2am so I might just get off to sleep and get at least some before they wake her!

Tues 25th Feb

So she woke herself! At 2am. They came in with drops around 2.30 while I was feeding her, so we don't know if the drops will wake her or not! She was up til 3 then I couldn't get back to sleep til after 4!! Tired me.

She had more chemo today and was pretty tired. She managed to go off to sleep with the TV and lights on so I left them on to get her used to the noise. It was so difficult getting her asleep and keeping her that way last time that I'm keen to embrace any opportunity to regain the ability to sleep in a hospital environment. Of course, she's not a newborn anymore, but we can hope…

The shared room is a bit annoying at the moment since the machine in the other half keeps beeping and the nurse is coming in to that half and chatting away at the top of her voice. Lucky we've stayed asleep - except for the waking and squirming earlier in the first hour or so of sleeping. She's been quite uncomfortable at times today. We're wondering if it's related to the chemo directly or as an indication of a side effect. I guess we'll see.

Still, today for the first time I had to put the sides of the cot right up because Jacinta decided she'd like to pull herself up - not all the way to standing, but on to her knees. She wants to stop sitting! Yay! She's really starting to move off from that spot to reach out for things and will go pretty far now she's got the confidence to move where she wants to go - from tummy to seat and back again. I need to get the play mat back and get her on her tummy again so she can work those muscles. I had her playing in the play room today, with an activity table that requires her to be a bit higher than sitting on the floor. I put her straddling my leg so she can reach. Today she pulled herself up standing so she could play with the whole thing!

So it seems we won't be stagnating completely while undergoing chemo!

As I said, tired me. Off to bed now. zzzzzzzz

Wed 26th Feb

Well now, today was certainly a day!

It started with the nurse in charge of our "journey" (I hate that word when applied to non-tourist situations) told us it looked like we'd be going home today. That was a very welcome surprise!
It seems the nurse co-ordinator is the one who really knows what's the most likely scenario.

So all we had to do was the last dose of Ara-C then bloods to be normal, then the injection of Asparaginase in the afternoon and a two-hour wait to ensure there were no allergic reactions.

We did all that, though she was pretty unsettled during the chemo. When she did sleep I got things pretty much packed and ready to go, and the pharmacist got our meds sorted.  Then we got the injection. She didn't like it. I was reminded of the parents of children who talk of their child getting their immunisation and screaming and screaming and never stopping……thankfully she did stop eventually. She was pretty unsettled the whole time. She fed for comfort and tried to sleep. She certainly needed it since she'd had one nap up til that point and it was about 2.30pm.  I couldn't put her down for a while, but then she went off to sleep. She woke again after a short time, about half an hour, and had just done a poo. She was upset and quite hot. I took her temp, got 38.3 (and if we hark back a couple of weeks, 37 is significant for Miss J), and called the nurse in.

The nurse who gave it had said to call if there was a fever or rash or anaphylactic reaction. So they had the other nurse check her and she had the doctor have a look. They started talking about keeping us a bit longer. The big head doctor happened to come past the ward and they all discussed it and she said she wanted to keep her 6 more hours….until after 10pm. Staying in overnight! Dammit!

I un-organised the end of the day changes for my middlest who was in and started to organise the next morning. It looked like we'd probably be out after breakfast. Then the fever kept going and she seemed quite bothered and not lucid. We gave her paracetamol. She was clingy and couldn't get comfortable. Then I noticed a rash and told the nurse who popped in to check the machine that goes 'ping'. She took a temp and got 38.5.

She called in the other nurse. The other nurse called in the doctor. He walked in and said, "oh, I thought she was feeding again….oh! She is!" They talked about antihistamines for the rash. The doctor started to talk about antibiotics if the fever hadn't broken by 10pm.

I queried how long a stay that would mean. He said it'd be at least 48 hours after the fever was gone. Sigh. She was still feeding and feeding and feeding. Then she finished, looked at me and started talking about things, using her hands and telling me something quite calmly about her body. She actually repeated herself and said "body" quite carefully. I forget she's one sometimes! Then she was blowing raspberries.

Then she did actual ones and the runniest poo I've seen for a while. We changed it straight away coz those chemo poos can hurt, and when I picked her up, she was much cooler. I took her temp and it was 37.5. (Yay!)

I told the nurse and handed her the yucky bedding and then managed to get Jacinta to sleep, properly.

Sleeping now for two hours and I think we're right for the night.

Fingers X for a good outcome in the morning!!

Thurs 27th Feb

And in the morning she was all good.
It took a while for the doctors to come round, but they were happy that she didn't have a temp anymore. There was a bit of wound care (they change the dressing on the Hickman weekly) and then that was about it.
The music therapist came past, then just as we were all packed and ready to go, the pastoral care worker came past.
This was one who told me about a lovely young man upstairs and just couldn't think of the right word. "Retarded", she reluctantly said, then said he had Down syndrome. I told her we don't say that anymore and that I think the term she was looking for was intellectually impaired. She said, "ah, that's right!". I hope she didn't say that to the young man she was pastorally caring for!

So we got out just after lunch and came home and picked up the daughters one by one and came home and finally made it into bed at some vaguely reasonable time. Nice to be home again!

Friday 28th February

So today was a normalish day. Jacinta had a good long sleep this morning, about 2-3 hours, which she definitely needed.

I organised to see Frozen at the local cinema - since I'd had special dispensation to go to the big shops as long as it wasn't too crowded. I figured it would be ok since it's nearly finished and there weren't many people there.

I did it so well that we almost weren't there either - I was interrupted several times in the ticket booking process and found I'd bought tickets for tomorrow! Lucky the kind person who shall remain nameless let us sneak into the cinema where it was showing today so it all went off as planned.

Later bedtime tonight again, but I remembered all her medicines!! Even the weekend ones!!


Sat 1st March

Well, we got out and about today. Charmed the lady at the bakery as she got us our two spelt loaves and spelt hot cross buns, dipped in gold and sprinkled with frankincense and myrrh (they must be for that price!).

Had a good sleep again today, though clearly not enough because we awoke at 11pm from out 6.30 bedtime having thought it was nap #2. Oh dear.

Not much to report really. One more day at home before we report back on Monday. It goes so quickly! (sigh)

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