Sunday, 2 March 2014

Week 6 Diary Luke Aemia

Sun 2nd March

So it's our last day at home today.

Nothing much to report. We all spent the day together which was nice. Jacinta stole a couple of naps here and there.

She was v tired tonight and couldn't sleep. Kept being woken by my middlest. The sad thing is I had meant to have bedtime chats with her sisters but they were both asleep by the time she finally went down. Oh dear. There's still the morning…..

We got some inexpensive BFF necklaces today in an attempt to create a sense of connection for my eldest. The plan is to say goodnight to the necklace and know that the person at the other end is doing the same. We'll see how it goes.

Tomorrow we see the Dr and start chemo in the evening. Hope it goes like last week. Then we'll know what we're in for at least. Might have to read back in the blog to remember!

Mon 3rd March

So today we came in. Poor old Jacinta was sleeping soundly in her carrier when we arrived at the hospital day oncology centre. She awoke just as I put her carrier down in the room where she was to be measured. I don't think I've ever seen her quite so "where the hell am I and what's about to happen?" as today. I told her what was happening but it was all a bit quick. She got pretty grumpy. Then, in  the next room, the nurse insisted on a bare weigh. All the reasons given were not really reasons since each was contradicted by the previous weighs on the ward. (We need it to give meds, we have to on the baby scales. How about, "we always do it this way and I can't be bothered checking"?) Therefore Jacinta, naked and just awoken let her have it and she didn't even apologise to Jacinta for making her uncomfortable, just clicked her fingers above her head to try and keep Jacinta still.  I don't know where they found her, but I think we'll be avoiding that one wherever possible!

Everything today was pretty routine really. Dr was all good. The room was ready so we dropped the bags off and went to chill down the road and play wedding stuff with Jacinta's aunty-to-be. Once back and settling in, I realised that my phone needed to be charged and went to charge it. It was gone. I searched through both bags I'd brought back and it was in neither. I knew I'd had it on the way back because it had gone flat in my hand. I thought I'd put it back in my bag.

I excused us from the ward and hurried downstairs and asked around. Then I retraced my steps as far as when I remembered last having it. Nothing. I came back and pulled out my laptop on the off chance someone had found it and plugged it in so I could use Find my iPhone. Someone HAD found it and plugged it in! I could see its exact location - and it wasn't exactly local! I think the kind finder works nearby. She volunteered to drop it off. All sorted in under two hours!

You know, for all we whinge and moan about these days and technology making us lazy etc, this kind of thing is very very useful.

So then it was time to start the chemo. Miss J had a late sleep so I didn't bother trying til she looked tired and she went off around 10pm I think. Last time she was grizzly after the chemo so I figured she'd be restless again. Not so much though, which is nice.

Time for me to sleep - though I just realised I have no pillows….we'll see how we go!

Tues 4th March

I found a pillow. No blanket though, just sheets.

So today was fairly run of the mill. Had morning chemo, didn't really settle until well after but had a good long sleep and was tired all day, but what does one expect?

I got her off to sleep around 6pm and found her awake on my return to the room from visiting friends up the hall about 6.50. She wasn't happy with me. I got her up again and since the chemo was starting in about an hour I kept her up. I figured she wouldn't feel like sleeping. Quite to the contrary. She felt like playing the squealing game, where you stare each other off then squeal at just the right moment and make the other one burst out laughing.

It was all very enjoyable until the child next door started crying and I remembered we were in a shared room and shouldn't be squealing at the tops of our voices at 9pm in a children's ward! We went for a walk, with Miss J squealing at the most unexpected moments and laughing her head off. If it hadn't been for the children trying to sleep I would have enjoyed her comic timing immensely.

On arriving back in the room I changed her nappy and right at the end of the change I thought I saw blood under her stat lock. Her Hickman line has three key points on the outside. There's the site where it enters the body, which is covered by a clear dressing that is changed weekly. There's a stat lock, which is a clasp that grabs on to the lines and sticks to the skin, preventing the line being pulled out. Apparently this is a newer thing. The third thing is the very hi-tech "elastopast and bobby pin" fastening the lines to the singlet. Each of the last two acts as a failsafe.

Yesterday I thought one of the pieces of elastoplast was loose. This afternoon I noticed that the stat lock was largely unstuck and pulling away easily from the skin. I checked with the nurse who said it could wait until the dressing change was due on Thursday, so long as the dressing wasn't being pulled away.

So when I thought I saw blood under her stat lock, I assumed it was that the dressing was causing skin to pull away. Actually no, she was bleeding from her Hickman site and it was coming out of the dressing, through her singlet and all over her tummy.

Quick cleanup and dressing change! Then we had to get a chest X-ray to see how far it had moved, because it seemed to have come out a bit.  I got her back to sleep.

We took her down to X-ray in the end, because they're just so busy. It took all of 10 seconds.
On checking the X-ray they found that since it was put in on 23rd Jan, it has actually gone IN rather than out.  They're happy enough with it so they're giving platelets to help stop the bleeding (and she's at 23).

SOOO ready to sleeeeeep!!!

I have a blanket.

Wed 5th March

OK, so today was one of those days where you just don't stop, and I think it may have been a combination of being on chemo, my middlest arriving with the last vestiges of her cold in the form of a very infrequently occurring but still quite chesty cough, the shared room, the sleep deprivation of the last two days (Jacinta's, not mine) & teething.

We stuck to the room and everyone needed me all day. Woohoo! Except for the repeat chest X-ray. I never found out what the results was actually, I didn't get a chance to ask. Must have been ok!

We had the last round of chemo despite the line looking like it had moved. They requested the repeat x-ray later because it seemed that Jacinta's head had been forward and this might have made the line look like it was further in. Crazy! Thankfully the nice nurse was happy to hang out with Em while I copped the radiation in my head, arms and legs. Yesterday they didn't give me a vest at all….hmm….

We were very tired today. Not ill or anything. Bit of diarrhoea towards the end of the day. We DID NOT like the injection. It's interesting. She's fine with a blood test, via finger prick or vein in the arm. She's fine with chemo going through her veins via IV, but inject a bit of chemo into her leg and she's not one bit happy, for a good few minutes. This is the girl who gets over it as soon as it's done. Injections get a real "What the $%*$!? did you do to me?" reaction. Mind you, I don't think that there could be much worse than chemo drugs that could be in them, so it stands to reason really. They wear full goggles, plastic coverall and gloves to administer it and change it etc so you shudder to think what it's doing to her body. (Aside from killing the cancer and giving her a very good to almost certain chance of survival.)

I did ask today how it was looking in terms of staying or going. Pretty definite staying at this point. The Consultant has decreed that it shall be so. I have fingers X that on Fri (when I've heard on the street that they do the discharges of everyone they can and reshuffle the rooms) we'll get moved to a single room. Wouldn't mind our old room back…….tiny chance of that though. I'd settle for my own bathroom again.

So by the end of the day, my middlest had completely done her dash, I had pretty much done my dash and Jacinta had well and truly done her dash, as she told me while I was inexpertly getting her dressed into her PJs rather than feeding her and then for a bit while I was feeding her. Oh, she was not happy that she'd been ignored today - which she hadn't exactly been, but clearly she felt as though she had. Ah, mothering. You just can't win. How's that for a defeatist attitude? (Insert winking emoticon here.)

Early bed tonight. We only had the one sleep so I'm hoping this isn't interpreted as a late nap.
Getting the blogging done early in case.
There's been a lot of talking lately. Today she was sitting on my lap telling me all about stuff and kept saying Mumma in all the right places. Yay!  That's everyone in the family she's said now.
I really don't think we need to start signing at this point. (Though I'm all for everyone learning to sign. It makes the world accessible to the hearing impaired. Imagine if the elderly all knew how to sign. Oh the hilarious misunderstandings that would never happen - unless you thought someone signed 'tree' instead of 'knee'...)

Definitely time to stop typing. Night!

Thursday 6th March

Have just gone through and re-dated all the previous days in this week. I'm on it now. Clearly some things don't matter when every day is determined by blood counts and days post chemo. In here it's not the 6th March, it's Day 12! (I just realised it's actually Day 12!)

So this morning the doctor I've never actually met came around (she normally hangs at the back and writes down what the big Dr says - whoever's being the big Dr. Sometimes it's the Fellow (who's a lady) and sometimes it's the Consultant (who's also a lady). Pretty much everyone's a lady around here. There's one night Dr who's not a lady. Some of the Dads aren't ladies either. Alright, I haven't seen a Dad who is, but let's not rule it out. I haven't met them all. (And it's not completely outside the realms of possibility in this day and age.)

Anyway, this lady doctor came around and she said we'd be looking at going home today. "Really? Are you sure?" I asked her. I had heard that the Consultant wanted us to stay in and that doesn't normally change. She said she had heard at the morning meeting that we might be going home.
She went to check. I figured maybe the Fellow had misunderstood my question when I asked yesterday, and answered for overnight rather than the rest of the month.

She came back and said that in fact we would be staying the rest of the month. She had it wrong. Oops!
Bugger. Ah well. Maybe there's a chance of getting our own room sometime soon. I heard on the grapevine that the shuffle happens on a Friday. The lady who told me that was discharged today and I know the people next to us are going tomorrow if all goes well.

That's a relief in itself. Due to unfortunate timing, they had visitors who were talking very loudly and playing non-western non-relaxing music at a reasonable volume just as I'd got Jacinta off to sleep for the night and I couldn't transfer her without waking her, which happened. Once she's awake after sleeping, she'll be up for hours. Thus her 7pm bedtime wound up being a 10pm bedtime. There are few things that make me really angry, but having a sleeping child woken up again before their expected sleeping time is over makes me want to slap someone. Quite honestly. I probably wouldn't, but oh I feel like it in theory.

So any trip downstairs for today was cancelled. Any other jobs that needed to get done did not. We treaded water and tried to sleep for a couple of hours until things quieted down over the curtain. By 8.30 it was only the patient who was making noise, but he couldn't sleep. And I couldn't really begrudge him visitors or talking to his Mum, he's been vomiting for the past two days and feeling pretty cruddly from what I've heard.

Ah well, fingers X for that room! At least I got to shower tonight, which was super lovely. How strange to wander through the overnight accommodation area where I would have stayed and, indeed showered, had there been a room the night Jacinta was born. But as we know, the Women's had a room so she went there and I stayed behind. It turned out I could have stayed there while she was in Intensive Care after the heart op too, but found out too late. Never mind.

So, being Day 12, of course we're staying in! Last month she got a fever on Day 14 so that's only Saturday. (Not that we're expecting it to happen exactly the same each month.) They're expecting her counts to stay down for longer this month because they hit them when they were down with the second lot this round. So who knows when they'll come up again? They're on their way to zero at the moment.

I just hope that we make it out in time to spend a few days with the family before they all head off overseas!!  (And it would be nice to see them off to the airport.)

At this rate it looks like we'll be sitting at home while they're overseas and then going back in when they get back, but hopefully we'll time it better.

All speculation. Time for bed.

Friday 7th March

So today was medically uneventful. It's Bactrim day again - we give that on Fri, Sat and Sun. The nurse this morning came in and asked if we were continuing the eye drops. I was quite surprised since the nurse yesterday said "this is the last dose" when we gave them last night. That's what this nurse thought was happening too. Somehow overnight the night nurse had got the idea that Jacinta's eyes were looking red and that we needed to continue the eye drops.

We had the slightly unusual situation here where the 1st year graduate nurse who's been here 8 weeks was on the right page and the well experienced nurse was way off. The grad nurse is a clever young lady, very on the ball. I'd be quite happy to have her all the time. Sometimes night nurses just get stuff wrong. Most stuff ups have happened overnight. I can't sufficiently explain it, but I suspect it's because the head staff are not on so they have to make it up a bit as they go along.

So the best guess I can come up with is that the night nurse accidentally gave Jacinta more eye drops and then had to justify giving them so did this by saying her eyes were a bit red. The thing is, her eyes didn't look a bit red, mostly because they were closed for the duration of her shift!  If the previous nurse had noticed it she didn't say anything to me - and that's not how things are done. They don't secretly change things and not tell you here. They think it might need changing, tell you, go and ask the Dr and then come and tell you what the Dr said and if you disagree, go and get the Dr to tell you herself. (I went to say himself, but then realised there's no point! Odds dictate it's a lady.)

Anyway, no biggie. Clever nurse sorted it out.  Though it does explain how come I heard a shutting door and a very irate Jacinta at about 4am (when the drops would have been due…).

So we had visitors today! Yay! We love visitors. So that was nice. The noisy neighbours were discharged too, which was nice. They were replaced by more noisy neighbours who thankfully have a child still in nappies so the bathroom can be shared, since it's not being used by the children.

I went and introduced myself this time since I didn't want a repeat of last night. I let the Mum know what my plans were for the evening and we apologised in advance for any badness on our part.
I happened to see the person in charge of co-ordinating our "journey" and just asked about the situation with rooms and fullness or emptiness, with reference to my ability to shower in particular. Because I was so nice about it, she made sure the nurse in charge over the weekend knew. This excellent nurse said I was top of her list. Nice to have friends in high places!

So I got Jacinta off to sleep at the earliest realistic bedtime, 6.30. I nearly snuck downstairs about 7pm but thought I'd hold off til she got past the surfacing bit at the end of the first sleep cycle. Lucky I did. About 7.15 a whole bunch of nurses came in to the other patient's half on the other side of the curtain to hang chemotherapy. This takes at least two nurses and there was a Mum and a Dad as well. It sounded like more even, than that. They were all chatting to the patient to try and distract her. And we were awake!

So I rushed over and got her resettled in my arms. Just as that was done, there was the sound of people pleased to see the patient who just got her chemo hung up. It was relatives visiting! Yay! I decided I was NOT having a repeat of last night. I opened the door and headed out the hall and down to the interview room. I closed the door and turned off the light and got to work getting her relaxed and sleeping again. After about 10 minutes I thought it might be safe. Slowly, slowly I snuck back to our room. It was better, but still dicey and she was still jumping a bit here and there, so I stayed holding her on the bed and stroking her arm to give her something to put her attention on so it didn't get pulled away by door sounds or loud comments.

The nurse, who had passed me in the hall earlier came in and found me like this. She went through the curtain, came back, went back outside and came back in. She asked me if I'd like to change rooms right now and I said "yes please!". So we moved. Yay!!!

In the end, Jacinta did rouse and I had to feed her again and get her back to sleep again, but it only took til 9, rather than 10. I could have snuck downstairs had I really wanted to.  So now I can get unpacked and put my suitcase away, go to the toilet whenever I want, have a shower any day and have some control over the environment!

In the defence of the neighbours, the rooms are configured in such a way as to make you feel like you're in your own room, which makes it hard to remember to be quiet when you otherwise would in a shared room or ward. (Like when there's a patient sleeping in the next bed!)

All's well that ends well.

I spoke to the head Dr too, who said that Jacinta is being kept in because of her heart. She is concerned that if something cropped up, any delay might be more harmful because of her heart, so she wants to keep her close just in case. This means therefore that every month we'll be kept in while neutropaenic, and they won't send us home on the off chance. Ah well. At least we know.

Sat 8th March

Today the family came in. Yay! It's been nearly a week since I saw my husband and my eldest. Goodness! We Skype most days, but it's surreal to be in the same room as them.

Medically, it was less eventful than yesterday. We saw the nurse very rarely and only to check her temp, which was fine. I'm taking olive leaf extract for me at the moment to ward off a lurking lurgy and I'm hoping its beneficial properties are filtering through her milk. Certainly she hasn't caught what her sisters have had and which I've been fighting, which is great.

The middlest stayed while the eldest went to a party and Miss J barely got any sleep today. So this evening when it was her bedtime and we were all together again I had to evict the older two to the playroom so she could finally nod off. Loving the single room today. She hasn't thought about waking once.

Tomorrow is Day 14. Last cycle she spiked a fever on Day 14 so I'm touching wood figuratively that she doesn't get one this time. It just means antibiotics, which I like to avoid wherever possible, and that means being stuck to the pole til they're ceased. Fingers X we don't go there this time! Time for an early night, I think!

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