Today was the day before S-day…
The day before Hannah’s surgery…and it’s been a great day!
5.45am, Alarm goes off
For just a split second as the alarm went off, I thought it was just a normal morning and just felt mildly irritated that it was time to get up already (the alarm had interrupted a very random and surreal dream in which I was chatting to Jack Dee – ?! – about an advert he’d done for a prawn company – WHAT?!? – that wasn’t very good because he’d got some restrictive clause in a contract with another prawn company he’d previously done an advert for…ANYWAY…my random weird dreams are perhaps for another blog)…
And then I remembered that today wasn’t an ordinary day. Today was the day before the surgery! And, very suddenly, my heart was beating faster and I was very scared, and sad. Because of course I wish we didn’t have to go through this as a family and of course I’m more than aware of the risks. And then I sighed and thought: “Here we go! It’ll be fine, deep breath!” I switched myself into ‘daughter in hospital’ mode.
We all got ready and worked fantastically as a team, getting washing-up done, packing up perishable food that we could take to Simon’s mum’s house etc. At about 8.30am, we set off.
The journey
The journey, despite all the severe weather warnings and, yes, some pretty hefty rain, was uneventful. Simon had agreed to plug Hannah’s iPod into the car stereo (I joked that her music taste is marginally better than his, even though years of ‘conditioning’ from being in the car with him have meant that Hannah also likes a lot of his ‘dance rubbish’). The benefit of having Hannah’s iPod playing was that Hannah, as is her habit, sang along, word-perfect, to every song. We’re not allowed to actively listen to her…as soon as she realises we’re listening, she stops singing, all embarrassed, but it was a delight that lit up my heart and made me smile all the way to Birmingham to listen to her sing along so joyfully and tunefully, often picking up the harmonies rather than the main tune, to every song. Our own personal concert.
We stopped off at Simon’s sister’s house to see our nieces and nephew. Our little nephew, Kian, who is three years old, had somehow spotted the name ‘Hannah’ on a Coke bottle in the supermarket a few days ago and wanted to get it for Hannah for her hospital stay. This morning, he proudly presented her with the label. He’d drunk the Coke! That gave us all a good giggle! I welled up a little as Hannah and Lauren (our eldest niece, aged 17) had a hug as we left, because the enormity of what’s happening tomorrow and the fact that Lauren wouldn’t see Hannah again until after the surgery, suddenly came crashing down on my consciousness.
We then went to TGI Friday’s for lunch, as a treat for Hannah (we’d eaten in the same TGI Friday many years ago, just before Charlie’s heart surgery).
Hospital
Shortly after we arrived, we were greeted by Hannah’s nurse, who happened to be Katie, the Junior Sister who has been here since we started coming to Birmingham Children’s Hospital with both girls. She made us feel really welcome; it almost felt like ‘coming home’, in a way. It’s comforting to know the hospital, the Ward and the staff.
We met the surgeon, who went through the procedure again and the risks. 3% chance of death. 1% chance of brain damage. Risk of infection etc. These words are always difficult to hear and to read on paper. Even more difficult to tell your daughter when she’s old enough to ask and to read and even add her signature to the consent form (which she wasn’t bothered about doing though).
About 98% chance of very good long-term outcome, hopefully 10-15 years before the new conduit requires more work or a replacement. He hopes that, by the time that happens, they’ll be able to do something to the conduit to keep it open and stop it succumbing to ‘furring up’ as these tend to, rather than requiring a replacement. This is where developments are heading, apparently. Great news!
There are three types of conduit they can use and have available tomorrow:
- Animal (she currently has a bovine one)
- Synthetic
- Human (donor tissue)
They want to use a human one if they can (Hannah: “Yay! I’ll be human again!”) as it tends to give the best long-term results, but will make the final decision during surgery if for whatever reason they feel, at the time, that a different one would be better suited. I am hugely grateful to everyone that puts themselves on the organ donor register and those parents/relatives & loved ones who make the very difficult decision at an already impossibly difficult time, when they’ve lost someone they love, to consent to organ donation.
In terms of timescales, typically they’d expect that Hannah would go into ICU tomorrow night after surgery and be ready to be woken up the following morning, to then come back to the Ward the morning after that. Typical hospital stay 7-10 days, then another 2 weeks or so off school. No PE for about 2 months. Hannah was NOT happy about that! Who’d have ever thought I, of all people, would have a daughter who loves PE?! The last time Hannah had open heart surgery, she was in intensive care for 2 weeks and on the Ward for another 2, but she is much stronger and healthier going into surgery now than she was then. We’re keeping everything crossed but are not taking anything for granted!
We also asked about the scar. Could they glue the top layer of skin? This was done for Charlie when she had her defibrillator fitted and I’ve heard some surgeons do it for open heart surgery wounds, too. It keeps the wound neater and also reduces risk of infection by sealing the wound completely. The surgeon said they use soluble stitches, but he did say that he’ll try to completely remove the previous scar tissue and give her a brand new scar that he’ll make sure goes no higher up than her existing one. Let’s hope he manages that. It would be great. She is a teenage girl, after all, and whilst her health is the most important thing, if they can also minimise the scarring, that helps.
The surgeon told us that Hannah’s surgery will be in the afternoon tomorrow and should last 4-5 hours (which means it’ll be much longer for us, as they have to put her on heart & lung bypass first, then take her off bypass at the end, get her settled in ICU etc…hopefully the surgeon will come and see us with an update before she’s settled in ICU…they often do).
Meanwhile, Hannah had already had ‘magic cream’ put on her hands to prepare for the cannula insertion. She’d done all her swabs etc and declared her atheism (“I’m VERY atheist!”) when asked about religion, just in case anyone had any ideas about sending in a chaplain at any point! Hannah to a Tee!
Hannah eventually had her cannula put in (poor thing…she’s had that many over the years, it’s getting difficult to get a vein, but she was really brave, as always) and bloods taken.
With nothing further to do, she settled down to keeping busy: She made me a loom band (a fragranced one….coconut and banana! Yum!), went on Facebook (as did I), caught up on Casualty on iPlayer (she’s the only person I know that watches – always has done – hospital programmes, even while in hospital!). Then Simon’s mum came to visit and after she’d left, with Simon, Hannah and I settled down to watch a bit of ‘Back to the Future‘ until she was tired and decided to try and get some sleep.
I know she’s really scared & nervous – she said “I know I won’t sleep tonight” when we got here earlier. We’ve had lots of cuddles and hopefully we’ve managed to make the whole experience less scary for her. I wish I could take all this away for her, but unfortunately it is what it is. Maybe Hannah wouldn’t be the amazing person she is without all these experiences. She probably wouldn’t be 100% determined to become a paediatric cardio-thoracic surgeon when she grows up. Who knows?
Oh, and Katie came in with some GREAT news: We’ve been given a room in the fantastic parents’ accomodation, Ronald McDonald House. This is a huge relief as it means that, at the very least while Hannah’s in intensive care and there is no possibility of either of us sleeping next to her, we’ll be a few minutes’ walking distance away, rather than at least a 20 minute drive.
Tomorrow looms ahead, scary and ominous. But today was a good day and Hannah is a tough cookie. We’ll all get through tomorrow and take one day at a time as she recovers.
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