Day 15 after heart surgery…
…and still a few challenges to overcome
A restless night
Hannah and I had quite an uncomfortable, restless night. From about 1am onwards, Hannah was tossing and turning, struggling to sleep and complaining of stomach cramps. Earlier in the night, she’d felt quite hot to the touch and was complaining of being too cold (she always wants the room warmer than I do and lots of blankets etc). I’d given her an extra blanket and opened the window as I was extremely hot. By 1am, she felt cooler to the touch, quite sweaty, and had kicked off the extra blanket. She was no longer complaining of being cold.
The lump on her chest was still there but not as prominent/raised anymore. Still a similar size/area though.
Meanwhile, my back felt like it was being split into lots of pieces by the recliner armchair (very comfortable until you fully recline and try to sleep on it – then the back-rest is markedly higher up than the seat, meaning there is essentially a ‘step’ digging into your back in fully-reclined position).
I managed to sleep in 30 minute bursts, at best. That’s when Hannah wasn’t grabbing my big toe and shaking my foot to wake me up and tell me I was snoring too loudly! I would give anything for my daughters, but Hannah is now also old enough to understand that if we have to share a room while she’s in hospital, it’s not ideal for either of us. After the second time she woke me, I told her I can’t help snoring and that I need sleep, too. She apologised and I managed to sleep until about 5am…a bit over an hour, before waking again and drifting in and out of light sleep until 7am. At 7am a nurse came in to do Hannah’s observations and we both woke up. Hannah complained of stomach cramps and a headache. She had some paracetamol and went back to sleep. When she woke up, the headache had gone but her stomach still hurt, so she didn’t want any breakfast.
A day of waiting…and a poorly Hannah
We were told that the ultrasound scan would be in the afternoon, so we had to wait for the ward rounds so that the cardiologists could have a look at Hannah’s lump and then we were free to take her out for lunch.
Anthony, the brilliant (and very funny, great with kids!) cardiologist (I think he’s a cardiology Fellow) was on ward rounds this morning. Much in contradiction with yesterday’s assessment by the surgical Registrar and in agreement with me, he immediately said “it’s fluid”. He didn’t seem particularly worried, however, and said that once they’ve established this and as long as they’re not worried about it, they may just send her home and wait for it to go away by itself.
We took Hannah out for lunch adn she looked decidedly ‘not herself’. She was very tired / listless, quite grey in colour and couldn’t/wouldn’t eat anything.
By the time we got back to the hospital, her stomach was cramping quite badly and all she wanted to do was sleep. She felt nauseous and had one instance of diarrhoea.
The nurse came in to do observations – we explained that we thought Hannah may have a tummy bug. She took Hannah’s temperature, which had spiked to 38.1ºC and gave her paracetamol. She explained that, because Hannah now has a temperature, the doctors would probably want to take some blood to send for cultures. She also said that if Hannah has any further instances of diarrhoea or starts vomiting, they’ll need to turn her room into an isolation room. The fever responded very well to Paracetamol and came back down to a normal healthy body temperature very quickly – and stayed down.
Hannah spent much of the afternoon asleep, with a couple of interruptions when doctors tried to take blood. Her veins, which have had a lot of cannulas in them over the years and recently because of her surgery, were not co-operating. The first doctor would put a cannula in, it would appear to bleed back, but then she couldn’t draw blood. She also tried to flush the cannula to see if she could at least save the cannula for administration of medication, even if she couldn’t get blood from it. But no. In two separate locations. Same thing.
Later, another junior doctor came in to have a look with a fresh pair of eyes and had a similar problem. She finally managed to find a vein, but yet again could not draw any blood out. She did, however, manage to flush the cannula so it could stay in and be used if Hannah needs it for medication administration over the next few days. She then had to draw blood from a different vein and this time it worked. Phew! Poor Han-Ban! She was so, so brave. Some of it really hurt and she was crying, but kept really still and let them do what they needed to do.
When I think that, over the years, we’ve heard kids kicking and screaming over far less (including a 16-year-old last week who screamed and had a temper tantrum when they just wanted to give her oral medication!). I’m so impressed with how brave and stoic my daughters are. I know they’re my daughters and I’m a little biased, but we’ve been told by nurses many times that Charlie and Hannah are exemplary in how they behave in hospital and how they deal with all that is thrown at them.
So … this lump then…?
After a lot of waiting to be called to go downstairs to medical imaging for the ultrasound scan (and apparently some politics and the imaging department playing ‘silly buggers’ – at one point it looked like she was going to have to wait until tomorrow, but the Ward Sister and the doctors intervened and put their foot down), Hannah had her scan.
Even Simon and I could immediately spot the dark area indicating an acccumulation of fluid! I do feel slightly vindicated, given the Surgical Registrar’s reaction yesterday and how adamant he was that there was nothing there…he almost just agreed to the scan to pacify me! I’d rather there wasn’t anything there, but I am glad I stood up for Hannah, knowing something wasn’t right, and trusted my gut instincts. Don’t get me wrong; we’ve had such fantastic care for both our daughters here at Birmingham Children’s Hospital, but we have learnt, over the years, that on a few occasions, there are professionals that aren’t open-minded if something doesn’t fit their theories or what they’re used to. And that not all medical professionals are used to dealing with parents who ask questions, are inquisitive and have opinions. And there have been times when we’ve had to push for what we knew was right. Politely, but insistently. And on those rare occasions we’ve had to do that, we’ve generally been right.
The surgeons then reviewed the ultrasound scan and report and one of them came to see us. They aren’t sure whether the fluid is a bit of blood or whether it’s infection. Although there is no heat or redness with the swelling (and it has gone down since yesterday)…and aside from the brief fever (most likely due to the potential tummy bug), there is no indication of infection…they have to make sure. So they needed to take some bloods (see above).
They may get some results as early as tomorrow, but it could take a couple of days.
If there is an infection there, they’ll need to take her into surgery and re-open the wound to clean it all out! Poor thing. I really hope it doesn’t come to that. I asked if they could aspirate any of the fluid to see what it is, but the surgeon explained they don’t want to do that, in case they puncture through any kind of ‘seal’ that is keeping the fluid in one place. If it was infection, it could then spread much further if they did that. We’ll have to wait and see what the bloods reveal. I hope that the tummy bug doesn’t confuse the issue…e.g. if they look for elevated white blood cell counts as an early and quick marker of the body fighting any kind of infection!
An additional puzzle to solve…
This morning, I had a call from our Doctors’ surgery asking to book Hannah in for a kidney function test. I asked what for, as we’re in hospital with her at the moment and she hasn’t needed to see the GP in months….The Receptionist said she’d find out for me and could I book her in when we’re back.
I explained, as politely as I could, that she’s just had major heart surgery and has been poked and prodded more than enough…and that I’m not booking her in for any blood tests until they can tell me why she needs them.
Part of me wondered whether they’d been requested by Birmingham Children’s hospital in preparation for her coming off post-surgery diuretics at her September check-up….but as we only got discharged Sunday and Monday was a bank holiday…and we have the discharge papers for the GP at home….and there’s no way that a full letter from the hospital would have been written so quickly, let alone sent and received….and they’d have told us on discharge that she needed a blood test…it was unlikely.
We asked Tracey, the Ward Sister, and she confirmed nothing had been requested. She even went as far as checking whether anything had been requested for Charlie (and perhaps our surgery had got the two of them mixed up) as apparently with one of the medications Charlie’s on, she should be having regular kidney function tests….she’s been on that medication since her cardiac arrest well over 4 years ago and has never had those tests, so that’s something else we’ll need to chase up once we’re back home!
Anyway, I eventually had a call back from the doctors’ surgery and was told they had a request in a discharge paper dated 14th August. This initially really threw me, as Hannah was in intensive care until 14th August. Then they read out more information and the facts emerged. Someone at our doctors’ surgery had obviously got a little over-zealous and not read the note properly. They’d received, for information purposes only (!!!), a copy of the discharge papers from intensive care into Ward 12…recommending continued monitoring of the kidney function, which was done in the early days on the Ward!! Mystery solved, but seriously, I do wonder what would happen if we weren’t on the ball as parents and just blindly went along with everything without ever questioning! No harm done, at least.
It’s now 7pm and Hannah is a lot brighter, watching TV and giggling away. She needs to eat a bit of toast or something so she can have her daily dose of aspirin. Let’s hope she manages to eat that and that this tummy bug is at least one problem she’s averted with minimal trauma along the way!
Simon’s sleeping at the hospital tonight, so I’ll get a comfortable night’s sleep at Simon’s mum’s house and a good shower in the morning. The only way for both of us to keep going is to take it in turns on the ward. I hope Hannah has a more restful night than last night…We’ll see what tomorrow brings!