heart surgery | is the lump a seroma? | Day 16

Hannah’s recovery from heart surgery l Day 16 | Seroma?

Seroma or infection?…

…That is the question!

A bright and sunny start to the day after a restless night

Hannah (and I) had a rough night.  Hannah herself has come to the conclusion/realisation that she always seems to have a rough night when I’m with her instead of Simon!  She was fine until about midnight/1am, then started shivering and spiked a fever again.  She took paracetamol and eventually the fever went and she slept a few hours uninterrupted, but in the meantime she tossed & turned and breathed really hard (more panting than breathing) and couldn’t get comfortable or fall asleep.  If I nodded off and started snoring, she’d poke & prod me as I would be stopping her going to sleep, so we were both restless.

From about 3.30am onwards, Hannah slept and so did I.  Luckily, as I’d waited for her breathing to calm into good settled sleepy breathing before allowing myself to fall asleep, my snoring no longer disturbed her at this point.

At around 7am, I found her wide awake and sitting at the computer.

She’d already done her daily CHECK of this blog (oh yes, she checks up on me to make sure nothing goes on this blog or on Facebook about her that she’s not happy with! heehee).

One of the doctors came in at around 11.45 am to say she was booked for another ultrasound scan at 1.30pm.  Her bloods from 2 days ago showed that CRP was a bit high but her white blood cell count was normal, which would indicate that her body is dealing with inflammation (which could be quite normal as a result of surgery and would tie up with her possibly having a seroma) but not necessarily fighting an infection, as her white blood cell count would be up.

We were told this would be repeated today as sometimes there can be a time lag between one and the other.

Afternoon down-time

Simon and I left Hannah at around 12.45pm to go and have some lunch at Ronald McDonald House and when we came back just before 1.30pm to take her down to medical imaging for her ultrasound scan, she looked grey and listless and extremely tired.

She was now complaining of a new pain, somewhere around her waistline, on the right hand side.  She also seemed to have developed a dry cough.

We went for the scan and Simon and I got quite frustrated.  We told the sonographer about the pain on Hannah’s side and also the additional lump from what appeared to be fluid that had moved, just above her right breast.  The sonographer said that she could only scan specifically where she’d been asked to.  I pointed out that just measuring the initial lump wasn’t going to give a clear idea of what’s happening if, as we know and the doctors have told us, the fluid is moving around.  Wouldn’t it be useful to also scan other areas that it has or may have moved to??  She repeated that she can only scan where she’s been asked to scan and that if the doctors want any other areas scanning they need to send down a separate request.  I pointed out this would be very difficult as the fluid keeps moving!!

When we got back to the ward, we told Hannah’s nurse (a lovely Sister who seems pretty switched on) of our frustration.  We also told her about Hannah’s new pain and the cough and asked if she’d take Hannah’s temperature as she felt a bit hot.  The nurse also said that Hannah looked quite grey, which she always does when she’s unwell but the colour always comes back as soon as she’s no longer in pain.

Luckily Hannah had no fever at that point, but reported a pain score of 5 or 6 out of 10, primarily focused on the new area hurting on her side, though also some pain in the other 2 lumps/swellings.

She’s had paracetamol and, as I’m writing this, is finally managing to get some sleep after visits from 2 different Junior Doctors.

The first had a good listen to her chest and a feel of her swellings/lumps but couldn’t feel anything in the area where she has new pain.  He said that he wants more bloods doing, including cultures.  He explained that the collection of fluid (lump) that was scanned was a little smaller but said that, of course, that doesn’t necessarily mean anything as we know it’s moving around.  Contrary to what one of the surgeons had told us yesterday or the day before (I lose track), he said that one of the decisions the surgeons may make is to take a sample of the fluid if they can’t work out whether it is pus or a seroma.

Both doctors have asked us whether anyone else in the family has diarrhoea and we explained that one of Hannah’s friends at home – one of the friends she saw in the day and a half she was at home after being discharged on Sunday – developed a tummy bug at the same time as Hannah, so it is highly likely she has a viral infection, just like her friend.  The second doctor had actually not been aware of the diarrhoea at all until we mentioned it….Hello?!!! She’s got a great big ISOLATION label on the door…there are ample notes about this.  Did she not think to check?

Given that the diarrhoea is almost certainly the cause of the fever but is definitely causing confusion over her symptoms (fever, blood counts, etc), you’d think that knowing she has diarrhoea is quite an important fact??

The second Doctor did tell us that the CRP count from this morning’s bloods (taken painlessly via a finger-prick) was slightly higher than the previous one, but still no elevation of white blood cell count.  I hope that’s still a good sign that there is no infection there.

The second doctor also wants to have  stool sample checked.  Perhaps a bit over the top, given that we know Hannah had contact with someone who also developed diarrhoea at the same time as her, so clearly it’s a simple viral gastroenteritis (or enteritis, as she doesn’t seem to be suffering particularly on the stomach front, thank goodness).  Oh well, unpleasant it might be, but at least it won’t hurt or harm Hannah to put a bedpan into the toilet seat before she goes to the loo the next time.

Anyway, Hannah now has ‘magic cream’ (local anaesthetic cream) taking effect on both her elbows and hands so that one of the doctors can try, again, to take bloods for cultures and to leave a cannula in after the last one had to come out because it had folded back on itself and was therefore useless/not viable.  Part of the difficulty in getting viable cannulas in and drawing blood is that she’s a little bit de-hydrated from this diarrhoea.

 I don’t mean to moan and whinge, but…

As anyone who’s been following this blog and/or knows me will know, I do always try to find something to be grateful for and some positives in any situation.  Even now, I’m writing in my daily gratitude journal and am finding lots of gratitudes:  Hannah is still doing well, Simon’s employers are very understanding, we have lots of support, Hannah is taking all this with a lot of maturity and good humour, the staff are lovely here, the parents’ accommodation is fantastic and we managed to get a room again…the list goes on and on…

Large bedroom at Ronald McDonald House Birmingham | Heart surgery | Birmingham Children's Hospital

Our current room at Ronald McDonald House – something to be extremely grateful for!

But – and I do know this from our past experiences in hospitals, too – whilst the care our daughters have received has been outstanding and Birmingham Children’s Hospital is a fantastic centre of excellence, no place is perfect and made up of 100% perfect people.  The vast majority of doctors, nurses, other professionals, auxiliary staff etc are brilliant. 

But the longer a child is in here, the more complications there are, the less straight-forward the recovery is, the more the waters get muddied.  More and more junior doctors start becoming involved.  Messages get muddled & confused, not all information is always passed on to the right person and not always in a timely manner.  Different people have different opinions, want different tests to be done, have different interpretations of the same scans or x-rays etc.  Doctors write instructions/requests in a certain way and those carrying out those instructions carry them out to the letter (you get what you ask for, so if you request a scan & measurements of the same fluid collection as the one scanned before, rather than requesting a scan of that one and any other areas where the patient has developed lumps or pain, then that’s exactly what you get).

We, as parents, get frustrated. Hannah gets frustrated.  We end up with days like today when we’re all feeling a bit fed up.  I’ve had a bit of a cry this afternoon and so has Hannah.  She said she was crying because “I don’t like feeling like this” and all I could say was “I don’t like you feeling like this, either”.  We can only comfort her.

Ultimately, I know that the medical excellence that is here at Birmingham Children’s Hospital will shine through yet again.  One way or another all this will be resolved and Hannah will get better.  For now, we know she will be here at least until early next week.  Beyond that, we’ll have to see how things develop.  It’s all a bit trial and error.

I told Hannah “at least every time you or your sister have weird and unusual symptoms and strange things happening to you, you’re helping doctors learn how to deal with something new and helping other children with similar problems in future”.

She said “I don’t like being a guinea-pig!”

We’ll get there.  Today, I just want Hannah to feel well and happy and be back to her usual self.  I want answers that we can’t get at the moment.

Evening wrap-up – a great end to a mixed day

Hannah had a really long sleep this afternoon, then the doctor that didn’t know about the diarrhoea came back to take bloods for bacterial cultures and to insert a cannula, so they can give Hannah some intravenous hydration overnight.  I take my hat off to that doctor.  Hannah’s veins aren’t easy to find at the best of times, but with her being so dehydrated, they were even worse.  She searched for ages and unfortunately needed to go for one in an area that hadn’t had numbing cream on, but she got in there first time and, although it took ages to take just over 1ml of blood for the cultures, she managed it, flushed the cannula and sent us on our way!

We then saw 2 Consultants – Miss Natasha Khan, the lovely surgeon, and Dr Paul Miller, the fab Cardiologist.  They’re happy that the fluid keeps moving as, apparently, pus doesn’t tend to move around so much.  They’re fairly certain Hannah just has a viral tummy bug and, if she hadn’t just had heart surgery and wasn’t in hospital, they’d just let her get on with it.  They were quite funny actually, joking about how they have to meddle and be all doctor-y about it.  They want her hydrated and feel the pain in her side is kidney-related from not drinking and not having a wee all day.  If the lump stayed massive, they may decide by early next week to drain it with a syringe, but at the moment they’re happy that it’s not huge.  They still want all the cultures doing, just to be sure there isn’t an infection lurking.  They also want stool and urine samples.

I then had quite a giggle with the Sister looking after Hannah as she was saying nurses are obsessed with wee and poo, not just how much and when, but colour & consistency etc…ewwwww!  I then said that the cough had got worse, but that, on the plus side, she’s coughing nice and hard, so she’s expanding her lungs.  The nurse, Michelle, said.  “I like that, Mum.  Always looking on the bright side!”

Hannah looked much brighter by this evening, she laughed and joked again and ate about a third of the boiled rice (family tradition and excellent for poorly tummies) that Charlie made for her.  She also drank a cup and a half of water in a short space of time.

I watched a bit of ‘Dangerous Minds‘ with her (great film!) while Simon, his mum, Charlie and our niece, Lauren, went to Ronald McDonald House for some dinner (Sue and I had wanted ‘Curry Goat’ from the Caribbean place near the hospital).  Then Simon came back to settle in with Hannah for the night and I went back to Ronald McDonald House to have my portion of Curry Goat.  Sue and Lauren then left and Charlie and I had a really girlie night!

I did her nails (nail varnish topped with UV gel – we’d borrowed Sue’s gel and lamp etc) and then I topped my nails with gel, too, so the colour should last longer.  Then we settled down to catch up on the latest episode of ‘Scandal‘ – OMG we LOVE that series!  And what a cliff-hanger at the end of the episode.  It’s so dramatic!!! Love, love, love it! Am I ‘fangirling’ a bit too much?  Yeah, ok, I am.  But it IS a great TV show! And I love that Charlie loves it as much as I do and it’s something we enjoy together.

Hannah's heart surgery | girlie night with Charlie

Girlie night – nail pampering and watching ‘Scandal’ in bed! :)

We’ve had such a good chat & giggle tonight.  It’s been fab!  Now I’m going to finish this blog and spend a bit more time with my big girl who’s starting 6th Form next Wednesday :)

 

 

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