The day of the surgery…

…it feels like time stands still!

Tick-tock, tick-tock, tick-tock…

7am

Here we go again…Hannah’s had a good night’s sleep (though woke up before the nurse came to wake her at 6 for a last drink of water). I managed to sleep through most of the crying babies and beeping monitors (or go back to sleep after every noise woke me up), but woke up at 4.45am and that was that. Still, that’s considerably more sleep than last night. It’s amazing how quickly we always adapt to sleeping on the noisy wards!

When Hannah comes back from her shower, I’ll plait her hair again and then we’ll wait…

9.15am

Hannah has just gone in. Bless her, even with the pre-meds and completely zonked, she was upset once she was on the bed in the anaesthetic room. She welled up and was still trying to be really brave and stoic, as always.

Now, we have a good cry….and we wait for news this afternoon.

10am

We’re back in our room in Ronald McDonald House, having vacated Hannah’s bed space on Ward 12 and updated everyone that Hannah’s gone into surgery.  I have to have a good cry!  I’ve held back for so long, having to make the experience as calm and stress-free as possible for Hannah, but I’m scared.  Terrified.  What if something goes wrong?  I know that she’s in the best possible hands.  I know that the odds are strongly in her favour.  But.  But…I’m human and I’m her mum.  Simon’s scared, too.  What if the tearful eyes that looked at me in the anaesthesia room are the last time she looked at me?  What if her last ever thoughts were scared ones?  I can’t think like that.  I shouldn’t think like  that.  But the fear is there.  Today, of all days, it’s normal to feel like this, I think.

After I’ve had a good cry, I have a long hot shower and wash my hair.  That feels really good!  Simon and I go into town.  We have to buy a few essentials.

We then go for lunch.  It feels like our lives revolve around eating and waiting, not just on the day of the surgery, but whenever Hannah or Charlie are in hospital!  We have a wonderful Indian meal from the same place Simon took Hannah to in the evening before her last cardiac catheterisation – it appears our ‘directory’ of places we eat when our children are in hospital is ever-expanding!  We even manage normal conversation.  We’re just two people in a restaurant, having lunch.  I manage not to blubber away at the dinner table.  Makes a change!

We get the last few bits & pieces from the local mini-supermarket and walk back to our parents’ accommodation.

2pm

My ‘phone rings.  I jump out of my skin! “Mum, I’ve got to keep the line clear! I’ll let you know as soon as I have news!” Hm, maybe shouldn’t have quite bitten her head off like that 🙁  She probably only wanted to know when we want her to come over here from her hotel.

2.40pm

First ‘phonecall to Ward 12 to find out if they have any news.  Nothing yet.  No surprises there.  Whatever duration they give us, it’s always longer, because there’s lots they do after the surgery itself ends before they notify us that she’s ready for us to go and see her.  Especially when it’s surgery requiring intensive care afterwards…that can take over an hour for them to get a child connected to mobile monitors etc, then transported to ICU, then settled into the bed there and hooked up to all their monitors, all the IVs set up etc.

The nurse suggests trying to call again at 3pm.

And the wait continues…

A few messages from friends & family start appearing on phones & Facebook.  “We’ll tell you once we have news”.  That’s all we can say.  We know no more than anyone else but are very touched by all the concern, support and love out there.  It really does help to know so many people are rooting for Hannah!

3.20pm

We ‘phone Ward 12 again.  They check. She’s not in ICU yet.  They have no further news.  No idea whether still in surgery or being prepped for ICU.   We’re advised to try again in an hour if we’ve not heard anything.

I remind myself that the time to worry would be if we got a call from the surgeons.  No news is good news, kind of. We know it takes time.  We know to expect it to take longer than anticipated.  Still…it doesn’t make it any easier.

The wait continues…

 

 4pm

Simon’s ‘phone rings.  I jump out of my skin.  It’s something completely unrelated.   Some semblance of normal life carries on and everyday stuff still needs to be dealt with.

4.30pm

I phone the Ward again.  They can’t get through to ICU.  They call me back 20 mins later.  She’s still not in ICU, so no further news.

I am lying on my bed in parents’ accommodation, reading my book (thank goodness it’s a really gripping one!), but am struggling.  I can only concentrate for a few minutes at a time.  Besides, I’m so tired, I keep nodding off and waking myself up with a great big snoring snort as soon as I do!!! So, I can’t sleep, but I can’t seem to fully stay awake, either.

I respond to more messages from friends & family – “no news yet”.

This feels incredibly familiar.  We’ve been here before.  At least with the benefit of experience, the wait is something we were anticipating.  We worry, but we worry less about it taking longer than we would have done if we were new at this.  It’s still horrible though.  Wouldn’t wish this on my worst enemy!

Tick-tock, tick-tock, tick-tock…

5.45pm

(a lot of the rest of this post was written on my phone while sitting & watching Hannah, so it’s a bit more ‘stream of consciousness’ in notes form!)
We call the ward again. They check with ICU.  Hannah’s finally down there. Nearly 9 hours after we left her!

We send a few frantic messages to reassure people while picking up my mum who was snoozing in the parents’ accommodation lounge and hot-footing it to intensive care.

Hannah looks good. We speak to the ICU Registrar then one of the surgeons (main surgeon tied up with very sick baby. Might see us tonight or tomorrow). Surgery took a very long time because of all the adhesions as result of last surgery and long time between the two.

The branches they patched were very long and very narrow and furred up, so had to slice and patch a lot! Used bovine patches for these but human tissue for the conduit replacement.

Lost quite a lot of blood and had low blood pressure issue in surgery but resolved with fluids and a bit of blood.

Next few hours crucial. May wake her up tonight, depending on how she’s doing.

Scan in theatre and in ICU looking good. All as it should be. She’s quite cold but warming up. Haemoglobin levels good.

8.30pm
Last few hours gone in a blur. I’m sitting in parent’s kitchen in ICU while Simon sits with Hannah. Needed a cup of tea quite desperately.  Mum and mother-in-law seen Hannah.  Charlie came in, too.  Was fine (apart from when she saw the bag of blood as she’s really squeamish, but that was soon removed) and chatted to her in usual insulting tones, though gave her a kiss and said ‘I love you’…supposedly to see if it got a reaction! They’ve all gone now. Just me, Simon and Hannah again.

At one point Hannah twitched around her mouth. Nurse said she can hear us and is probably waking up a little but have to keep her heavily sedated until she’s breathing independently over the ventilator.

She’s by no means out of the woods yet, but so far, so good!

9.10pm
Just found out Hannah was on bypass for 188 mins during surgery!

She’s just had a couple of big coughing fits, looked irritated and upset and opened her eyes a tiny bit. Obviously getting upset with the ventilator tube and fighting the sedation (they haven’t turned sedation down yet)!

9.30pm
Another coughing fit. She opened her eyes a bit more. Looked really annoyed and upset. I said “remember you have a breathing tube in.I know it’s uncomfortable darling” and she nodded!

Nurse suctioned ventilator tube as Hannah was coughing so much. There was a bit of blood in it. Will keep eye on it but could just be trauma from the tube itself. .

Still trying to raise her blood pressure and also keeping eye on lactate. If they can get it under control, may exudate in the morning, but just have to see how it goes.

10.10pm
Simon and I had pizza in the parents’ room in ICU. When we got back, they were giving more fluids to try and raise blood pressure and also because lactate is still going up when it should be going down!

2 steps forward 1 step back as per our usual hospital dance?

10.30pm

Because Hannah keeps waking up a little and opening her eyes, we want to make sure that she has at least one of us with her at all times.  Just as I’m saying goodnight, she opens her eyes and tries looking around.  I tell her Daddy will be with her while I get a bit of sleep and then I’m coming back and Daddy will get some sleep.  I kiss her goodnight.

Alarm set for 2.30am so I can have a shower and go over for 3.30am.  Thank heavens we have parents’ accommodation around the corner!  We’re by no means out of the woods.  Anything could happen at this stage, but so far they don’t seem overly concerned about the blood pressure and lactate and appear to be still hopeful that they can extubate (remove the breathing tube) in the morning.  Keeping everything crossed!

Time to get some sleep.