Sunday 5 June 2016

Hospital Stay: Part 2

So poor old Sasha spent Sunday hooked up to a drip of fluids, dozing on and off in her hospital bed inbetween regular temperature, blood pressure and oxygen level checks, whilst also having antibiotics pushed in a few times via the cannula in her hand. On the plus side it had only taken three of us to hold her for the cannula insertion and bloods this time (see my post from 4 years ago) - I think she was just so shattered seeing as it was around 2am when they did this in A&E. Sasha also had a chest X-ray in A&E, which showed an effusion on one of her lungs and which led to the initial diagnosis of pneumonia.

(If this post isn't making much sense to you, try the first part of our story at Post Streptococcal Glomerulonephritis)

My Sunday involved frantic early phone calls home for the taxi service to bring food that Sasha would eat, and clean clothes for both of us. When Dad and big Sis arrived, it was just in time for the breakfast round, and Sasha sat up eagerly to eat her toast as she was obviously feeling hungry having eaten nothing the previous day.

Sasha on Sunday morning; puffier but hungry and smiling bravely
She looked much worse, but actually seemed fairly bright and we were amazed to watch her gobble down two slices of toast - amazed mostly because she is generally so fussy about how her toast is done at home, and about what spread is used etc, and this was nothing like that.

Sadly it was less than a minute after eating it when we saw the toast again, if you get my drift. I think that's the point at which I accepted we had to be there. The night before, I had been gutted that the A&E doctor had made me break a promise to Sasha, as that's something I very rarely do. I'd told her that if she took the liquid medicine, we would be allowed to go home, as that is what the doctor promised me. I hadn't made any allowance for the doctor changing her mind, or for the fact that Sasha was very ill, and it was very difficult having to go back on my word to Sasha. In all of this extended stay in hospital, one of the most difficult things to try and explain to Sasha was how the hospital was helping - as far as she was concerned, she hadn't even felt that bad when we ended up in A&E, and all the hospital was doing was making her feel worse!

So Sunday passed by in a bit of a sleep-deprived blur until it got to the evening, at which point a new patient was shown into the same room as us. Happened to be someone we already knew, and that was not good news. He and his mother proceeded to make lots of noise in the room, playing shooting and driving video games and having phone calls - on speaker phone! - until late in the evening (930pm) and at that point I had to beg the nurses to switch Sasha to a different room. It was only next door, into another room with 4 beds, but for that one night it made all the difference. We'd had such little sleep after being in A&E for 5 hours and then follow up testing the next day, that nerves were very frayed. The next night a teenager was shown into our new 4 bed room, and her mum also proceeded to have a very loud, long and late phone call by her bedside, but with no other free rooms we were stuck with her. Two nights after, when the teenage girl went, we had two young boys plus a teenage boy who left his phone on vibrate on top of his cupboard after he'd gone to sleep at a decent hour. It was buzzing away, keeping me awake still at midnight. That and the 'disturbance' coming from the other boy in our initial room next door... and by disturbance I mean the sound of furniture being overturned, shouting, and running up and down the corridor. Oh, the joy of a hospital stay.

I felt very relieved that I'd asked for the room move on the first day. Luckily Sasha slept through most of the disturbances, but on the Wednesday night her oxygen levels had started to fall significantly and so they hooked her up to a monitor which set off a loud alarm (and woke her) every time her oxygen fell below 90% - which felt like every 30 minutes. Eventually they decided she needed the help of some extra oxygen, so they set a mask up in front of (but not actually on) her face. This helped a bit, but the alarm would still go off every time she moved, or if the mask slipped. That was probably the worst night of our stay. The feeling of being unable to help your own child, being helpless, is very stressful and isolating. At the same time, a small part of me couldn't help thinking that if they'd just turn the noisy alarm off, Sasha (and everyone else in the room) would get a decent night's sleep and not be so stressed in the morning. But hey, what do I know, I'm no nurse...

Now I'm not exaggerating when I say that by this point we'd seen at least 20 different faces - doctors, day nurses, night nurses, sisters, food and cleaning staff, play specialists, radiologists, porters, nutritionists etc. It was probably closer to 30, thinking about it. All very confusing for Sasha, who struggles with new people and new situations.

The doctor who spoke with us on the Tuesday and Wednesday was a lovely lady who explained that they no longer thought it was pneumonia, as Sasha wasn't poorly enough (!). We'd been for an ultrasound of her chest and stomach, and although it had shown extra fluid, the levels weren't particularly worrying. The blood tests were showing low protein, and the puffiness was still unexplained at this point. The doctor drew this picture on a napkin, trying to help Sasha understand what the issue was:

Sasha was definitely not in a mood for listening or understanding though, and I asked the doctor if we could talk things through outside the room rather than in front of Sasha. That in itself posed its own problem, as of course Sasha wasn't keen on me leaving her side, but she seemed to accept it and from my point of view it was much better than the idea of Sasha being stressed out by lots of big words and things she wouldn't understand. It took four days for me to be awake enough to realise that I needed to try and be a shield for Sasha, and make sure that there was the bare minimum, and only very necessary, contact. I'm a big believer in the fact that there is always a polite way to ask, and it seemed to work OK luckily.

Sasha trying to put a brave face on it as we waited for the CT scan; possibly just as well she really didn't know what was coming...
By the Thursday morning there was still no decision about what Sasha's diagnosis was, and the doctor asked for a more urgent heart ultrasound. Then a CT scan was requested as they were getting concerned about what might be going on that they couldn't see. We made the mistake of telling Sasha about the CT scan before they were ready to take her, and as we'd been told in a bit of a rush, we hadn't thought to ask what it involved - neither of us have had one before. This caused extra anxiety for Sasha and she then didn't want me to leave her, so Dad had to go off and talk to the doctors alone, which was frustrating for me as I needed to hear their thoughts myself. Luckily Sasha calmed enough for me to go and join the end of the 'chat' with the doctors, but then I kind of wished I hadn't. 

We were informed that the heart scan had shown 4 leaky heart valves - a rare occurrence apparently. If there's something you don't want to hear in hospital, it's that a) they are not sure what the problem is and b) that it's a rare problem.

So we were told to go ahead with the CT scan and while we did, they would be trying to transfer us to a specialist hospital, preferably Great Ormond Street. The CT scan was probably the worst experience for Sasha - what they hadn't warned us about was the fact that they needed to inject more medicine very quickly before scanning, and this caused her considerable pain. We decided not to tell Sasha about the possible move until we knew for sure ourselves. When we got back to the ward at lunchtime, we were told that GOSH didn't have any beds free, so our hospital were talking to the Royal Brompton in London instead - a specialist heart and lung hospital. A couple of hours later, after assessing the case, they agreed to take Sasha, and it then took an hour for ambulance transport to arrive before we were 'whizzed' off to London. Luckily with no blue lights, as I think that would have scared Sasha (and me) even more, but it did mean the journey took 2 hours as London traffic is so bad!

Sasha on her stretcher in the ambulance, looking quite terrified. Luckily she slept for most of the journey.
I'll break here as there's plenty more to the story yet (sorry, hope you're not all as bored as I was...) but I'll end this post on the happy news that they did manage to find us a single room at the Royal Brompton, which made such a huge difference in terms of Sasha's anxieties and helping her rest and improve.