Saturday, 4 October 2014

Weeks 20-23... Diary Luke Aemia

So, yes, nearly finished How I Met Your Mother…..

We were finished the chemo element of round 5 and were visiting Day Oncology every few days to have bloods checked and adjusted accordingly.

We had a haemoglobin transfusion one day and a platelets transfusion the next time.
The neutrophil counts were always over 1.0 and being several days between tests, we never knew whether or not they dropped.

At home we had a ridiculous few weeks. I had finally got on top of my sinus infection. We had my eldest in emergency with febrile convulsions after the school disco. Then we had my middlest in emergency with concussion after catapulting off the bed and hitting her head on the floor.

Two days later my middlest came down with Slap Cheek syndrome and my eldest succumbed five days later. Three days after that, first thing Monday morning, Jacinta spiked a temp.

This is classic, textbook behaviour for a chemo patient at home between cycles. You're expected to arrive in the middle of each month with a temp for a short stay or to wait it out til the next round. We've managed to avoid it every time we were home until round 5.

So we arrived in Emergency. They started the process of antibiotics. This is meant to last for 48 hours or until blood cultures come back and neutrophils are up. They took a nasal swab to see if there was a virus. They assumed we had slap cheek and sent us up to another ward, the neurology ward, because slap cheek can make a person's neutrophils drop quite dramatically.

So we found to our delight that on this other ward, we could come and go as we pleased, to any part of the hospital, even though Jacinta was attached to a pump. I could wheel her pole downstairs to the shops or to look at the fishies. Later in the day we found out that her neutrophils had dropped quite dramatically since the last test and she was now at .2. This meant we were neutropaenic and though nobody on that ward was standing over us, we knew we shouldn't really go anywhere much.

The next day the oncology doctors visited us and said that she had not one, but two viruses. RSV (a nasty cold which can easily become sinusitis or bronchiolitis) and another one which is a common cold one but not one of the most common common cold ones. They said that RSV usually gets bad around day 4-5 and stays bad for about 5 days or so. "So she'll get worse before she gets better", said one doctor. "No she won't", I replied, in my classic insouciant fashion (mostly because I didn't think it was necessarily 100% given that she would, and if anyone was not going to it would be Jacinta, and that it was much more likely to happen if we stood around talking like it was a foregone conclusion). This Dr knows Jacinta and her super neutrophils that don't go down, so he clearly felt no need to argue the point.

The next couple of days we were kind of in a holding pattern. Her sats started doing this curious thing where they'd be fine for a minute then dip down to the low 80s for a minute or two then recover again for 10 minutes or so then dip down again. All (insert mild expletive) day.  By the Wednesday I think we were on wafting oxygen (where the oxygen flows through the mask which you hold near their face or in the general vicinity of their nose) at night and most of the day.  I was spending a lot of the evening repositioning it as she cleverly outmanoeuvred the mask in her sleep.  This is kind of where the bond between the ward and me started to break down.

When you're on a particular ward, you'll be managed by those nurses according to the parameters of the patients they usually see. Most wards in the hospital see patients for about 7 days or less. The parents have probably never been in hospital with their sick child before and have only just remembered the way out of the ward, let alone worked out how the sats monitor works or how to best position the probe on which part of their child's body for the best read at night (lengthwise along the big toe) as opposed to during the day (wrapped around the thinnest part of the foot), or what their usual body temp is (35.8), or how to take their temp without waking them (by ear), for example. (I could go on, oh how could I go on, but that's not the point.....)

So there are some differences in the nursing between your Oncology ward, your Intensive Care ward, your Cardiology ward and your Neurology ward. (I specify these only since they're the ones we've been in.)  Your Intensive Care ward is a place you could be for any length of time. It's a place children don't ever go home from, but they do everything they possibly can to get the children out of there to the ward on their way home for good.  You have one nurse for you and maybe another room. You can see them all the time. If you have a question you have only to wait a few minutes and they'll be looking in on you again. There are no MET calls (the emergency calls) in Intensive Care. MET calls get you to Intensive Care some of the time, there's nowhere to go from there.

The nurses will sit and chat with you about life, the universe and everything. They'll answer every question you have in full and with detail. They'll include you as much as possible in your child's care and listen very carefully to what you have to say. They focus very much on the family of the child in their care. Often they don't actually meet the child for more than a few minutes since the child will be in and out in a couple of days and barely conscious most of that time. The doctor comes around twice a day without much fanfare and says a few things and is on his way - unless you're just post-op then the team will come around to have a look.

Your Cardiology ward has a lot of children who are post-op. The Children's is one of the top paediatric cardiology hospitals in the world so they do a lot of hearts. I assume this has a lot to do with how things run. The morning rounds happen every day about 9am or so. It's standing room only. The head person, either the surgeon who did the surgery or the highest ranking ward doctor will put the patient's chart on the wheelie table at the end of the bed and speak to the crowd a little like a priest giving a sermon. The head nurse, the patient's nurse, the junior doctor, fellow and any allied health peeps there too will join in the discussion. You don't want to miss this because they don't wait for you. It happens whether you're there or not. If you are there the doctor will ask you how your child is going and then speak to the room with the day's plan for your child.

The nurses will run the day according to this. This isn't any different to how any ward runs, I'm sure, but in Cardiology it's done exactly according to what happened at that meeting and to change that takes a lot of convincing. (Except for that time they didn't cease the medication that the doctor told them to cease..... and I so should have said something. Learned from that one - I ALWAYS say something now!)  It's like diverting a steam train to another track off-schedule if you want to do something differently from how it's usually done. I think they have one way of recovering children from heart surgery and they do it that way. Makes sense. They also have certain set parameters outside of which they have to call a MET call - I guess since hearts are pretty important. You don't want it to suddenly stop working.  There's a certain tension in the air in wards where they do call MET calls. The parents do get to know each other a bit through the Heartkids morning teas so it's a bit more social than some other wards.

Oncology is like a cruise ship. The patients there are as likely to be in for weeks or months as for a few days. The parents meet in the little kitchen and sometimes sit in there for a few hours chatting. The kitchen is always well stocked because our lovely fairy makes sure it is. We not only have tea, but several kinds of herbal tea on top of Earl Grey and the usual. There is a secret cupboard of emergency food, supplied by one grateful family. There is bread most days from a very kind bakery and fruit most days from a very kind other person. There are condiments in the parents' fridge, which is in the ward kitchen, and there are biscuits for your tea and lollipops for those who feel the need. The public holidays and festivals are celebrated with flashing necklaces and sparkly headbands. If there's a reason for cake, there's cake. There are a couple of charities who put on morning tea once a month. There's a fully catered dinner for the parents once a month. There's a hairdresser once a month. There's a team who do nails and massages once a month. There's ice-cream once a month. There's a weekly walking group. There's a puppet who comes around. There are celebrities who come around, some with cameras, some not. On the school holidays there are polka dot girls who bring fun stuff to the rooms.

Then there's the actual medical staff! On the Oncology ward almost every patient's treatment protocol is different. Even when the cancer and chemo/radiation/transplant is the same, the patients respond so differently, it's rare that two patients will require the exact same care. Your child is treated as unique and you are a very valuable source of information. The nurses refer to you a lot in making decisions and no changes are made, nor procedures done, nor medications administered without your say so. When your child is home they are still a patient and you are their nurse so you are treated as part of their medical team. The doctors do come around, but not at particular times. If they miss you they'll come back if there is anything important to say or any big changes to be made. There is no big group session, it'll just be the Consultant if they're there, the Fellow and the junior Dr. There's kind of an etiquette on who says what. The Consultant runs the conversation and refers to the Fellow for recent specifics and discussion on the daily progress and plan. The junior doctor says nothing and writes everything down. You get to talk to the junior doctor throughout the day if something happens or when they call past later to look in on you.  You'll see a doctor several times a day if things are gong on. If you're just waiting around to avoid getting sick, you'll see someone about once a day and people will mostly leave you alone.

Your Neurology ward is a little like the Cardiology ward in that their patients are mostly short stay. The kitchen is not very well stocked - tea and coffee, maybe sugar. Milk if they remembered. That kind of thing. Heaven help you if you can't make it out of the ward!  They do call MET calls more often, but their patients are much more varied, which I think makes their nursing a bit more flexible.  The first time we were admitted to this ward we were kind of under Cardiology but taken care of by the Neurology Drs since it was really just dehydration that was the problem. This admission we were mostly under Oncology and we saw our own Drs every day and some days twice a day. The nurses were interesting. They didn't know us from Adam - except he's a boy and we're both girls.

The nurses had no idea how often she'd been on wafting oxygen nor what it meant to Jacinta and her overall state of being to be on nasal prongs for oxygen. I resist and resist and resist oxygen directly delivered nasally for as long as physically possible simply because it causes so much stress it's likely to make her worse and lengthen her stay. She and I have a system and I honestly don't mind sitting there all day holding the mask within breathing distance of her face if it's a choice between that and the prongs. Then we got this one nurse on our second night. I met her as I came back upstairs about 10pm. She was holding a screaming Jacinta, who had been sound asleep when I left her to go downstairs for the first time that day. I put out my arms to take her and this nurse just held onto her. "I'll take her", I said. "Oh, OK", replied the nurse, looking either puzzled or put out, I'm not sure.

I asked about how she woke and the nurse said vaguely that she had her legs all sticking out of the cot. This told me how she woke. This nurse moved her, thinking she must be uncomfortable and stuck, and woke her in the process. I've had this before. It's always the one who doesn't like the look of the sleeping with limbs sticking out who wakes her up. (Never mind that she does it all the time and manages to get herself back in without any assistance and without waking up.)  So I was already grumpy. Not only did she get woken, but she got woken to find I wasn't there and she was alone with an unfamiliar nurse. Not cool.

This nurse was just a little bit over the top. The kind who hovered when I gave Jacinta her meds, trying to control exactly how I did it, physically, by reaching in and doing things with her mouth or trying to grab her hands. It was really intrusive, like she couldn't give up control. Then there started the saga of the sleeping. The hospital has started trying to enforce a policy regarding sleeping arrangements. Now obviously a patient who is needing oxygen etc or constant monitoring needs to be where they can be seen and reached and within a certain distance of the wall where the oxygen tap is. There have been one or two fatalities at a nearby maternity hospital involving very young babies sleeping with their mothers and dying overnight. I don't know the details and I can't find them anywhere. It's a bit urban legend, but that's the reason cited.  Anyway, they are worried about babies and small children sleeping with their mothers from a SIDS perspective and they want to discourage it.

So whenever Jacinta is having a lot of trouble staying asleep, I give up by 2 or 3am and bring her over to my bed for a feed. Since the hormones involved usually put me to sleep at that time of night I find it safer if we're both lying down with her nearest to the wall so she doesn't fall. This means we both get rest. She gets better faster and I don't fall asleep on the job. Anway, after having woken her a second time and me eventually taking her to my bed this nurse came to do obs about 4am and we were asleep on my bed. She said I had to bring her back to the cot and that I wasn't allowed to sleep with her on my bed. After she'd done what she needed to I tried getting Jacinta back to sleep by rocking etc and I tried and I tried and I tried. We stayed up til morning, not sleeping.  I wondered if the nurse would see the hole in her logic. After about 3 hours' sleep that night, on top of about 3 hours' the night before I spent the day struggling with somnolence, stopping myself dozing off and letting her roll off my lap during feeds.

The next night I got Jacinta to sleep. I had to go out so my husband stayed with her while I was gone. The same thing happened. The nurse woke her twice and my husband also intervened twice to stop her waking her. This was in the two hours between her shift starting and my arrival back at the hospital.
I must have managed to get her sleeping in the cot that night because I was woken about 7am by Jacinta screaming. It wasn't her usual, "I'm awake!", cry that she'll do if I'm not waking up quickly enough.  It was a real upset and angry scream. I heard the nurse comforting her and I heard a bandaid being opened. I was out of bed in a flash. This nurse had woken Jacinta by doing a finger prick blood test without me there and without any warning. I was completely livid. I told her point blank that we never do a finger prick without warning and never ever without me there. The nurse was suddenly all apologetic as though she had no idea that she had been doing something wrong and was completely mortified. I really don't know how she could have thought it was ok.

So that was the end of Jacinta feeling comfortable with me not being there. We were back to me not being allowed out of her sight, coupled with her being super jumpy while asleep and waking at the slightest change in position, making it very tricky to put her down! We made sure we never had that nurse again.

I also had the opportunity to talk with the next night nurse about what the policy on "co-sleeping" actually is and why it was a dangerous thing to enforce as a blanket rule (i.e. incurred brain injury from falling onto the hard floor because sleep-deprived mother is not allowed to feed lying down with baby placed securely to avoid falls). She very sensibly stated that they can't tell us what to do since we're the parents, but that they strongly discouraged co-sleeping. She also stated that the nurses are meant to have the chat with us and then leave us alone once we've talked about it. This was a relief to hear things weren't completely insane on that point. (And I should make clear, I don't have my children in bed with me for preference. I prefer to sleep alone. I only have them in bed if it means more sleep for everyone than if we didn't do it that way or a safer feeding environment when super-tired.)

At the end of a week there was room for us on the Oncology ward and we couldn't get there fast enough! It was so good to be home. Well, you know.

Another week in isolation, but on our own ward. A man with a camera came past asking if I barracked for Carlton because there were players coming around. I go for Collingwood. I told him he was wasting his time…. (Overseas readers google AFL, Collingwood, Carlton.)

There were some interesting moments of us sleeping on blankets on the floor since she wouldn't settle and couldn't come to my bed. One of my favourite nurses helped me move the parent bed to the middle of the room so she could be on oxygen and we could sleep properly.

By the end of the admission, we were so over it, she threw my phone over the side of the cot to its death. It was time to go.

Just about to lose the nasal prongs and go home!

Oh, and I did finish How I Met Your Mother. Legen .....(wait for it....)....dary.

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