Laura's Story\

Laura’s Story – Part 12 – Listed

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We were able to get a couple of hours of sleep in one of the parent rooms before deciding to get up and go see how Laura was doing. These rooms were such a blessing for those nights when we just couldn’t stray too far from Laura’s side.

As we turned the corner towards the PCICU, we saw Lindsay in the distance. She ran up to us and gave us both big hugs – she couldn’t believe what had happened. She promised that, although she was not on service, she would be around a lot in the next few days for whatever we needed.

Grief is a funny thing – it takes over parts of your soul but it does not change who you are. Grief and pain are NOT good enough reasons to stop being who you are – they are not excuses to be rude or belligerent – unfortunately, I came across a few people during our stay who seemed to disagree. In our darkest hour, we couldn’t help but feel terrible for all of the people in the PCICU who had grown to love Laura. This wasn’t fair – they worked so hard to keep her healthy and it hadn’t worked. We remembered the excitement and the buzz the day that we were being discharged – everyone was so happy that Laura was finally graduating out of the PCICU and

this morning, they would arrive into work and find Laura – on ECMO, another 2 cardiac arrests later…

how could we face their pain and help them feel that it was justified? Being a medical professional does not mean that you are not allowed to feel – it was sad and scary and it was fair for them to feel the same way.

When we arrived on the unit, we were pleased to find a couple of nurses that we loved to pieces assigned to Laura’s bedside – it made all the difference! Laura was stable all night – the main issue that they faced was keeping her sedated. As you can imagine, it is important that she not move while she has those cannulae coming out of her neck – the slightest movement could jar them out of place and the site was bleeding enough as it was. They tried everything – rocuronium, dilauded, morphine, dexamethasone, kedamine, fentanyl, midazolam – the list goes on. She was on enough sedation to knock me out for a day or two but she was still waking up – she had become quite the little addict – incredibly tolerant to all the tricks.

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Laura ignoring the Doctor’s pleas to stay asleep

Being back in the PCICU brought a sense of relief to us. It might be difficult to understand, but when we walked back into the unit we were not entering with a sense of doom and gloom – we were happy. Happy? You’re baby just died in front of your eyes last night – how could you be happy? If you have ever had a group of people that you trusted with everything – you would understand. This was our family – our home – the safest place for Laura to be right now. Yes, Laura died last night – but you know what? She came back. She was still alive and if she was interested in fighting – so were we. She had made it through worse – there was no point in assuming she wouldn’t make it through this too.

Over the course of the day, we received many hugs and condolences from the nurses, RT’s and doctors – and from those who knew us really well – a few jokes. A few of the nurses were really good at lightening the mood – this was always a breath of fresh air. A few of the nurses took this turn of events really hard and were open in showing it – it is really wonderful to see such humanity and compassion in the people who are looking after your child. Everything in hospitals nowadays seems to be taking the person out of the job – call them clients, be professional, don’t care too deeply, etc. Some of this is really important but for the family on the other end, the extreme love that was shown to us in this unit is beyond compare – I don’t imagine I’ll ever have the chance of being around such an amazing group of people again.

Laura had been peeing well which was a big sigh of relief – the kidneys tend to be the first hit when a cardiac event occurs. Her kidneys had always been one of her strongest assets (ever heard a new parent brag about their baby’s kidneys before? Probably not…).

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Laura’s lovely sunglasses and cute little pout – ECMO day 1

This time on ECMO was different than the first time. Laura had not been given nearly as much fluid so she was not as puffy as the first time and her colour was better. The first time on ECMO it took days for her to stabilize but she had been stable from the beginning this time.

Lindsay came by before rounds and had a chat with us – we were convinced that transplant was the only option and Lindsay agreed – we just had to wait to see what the surgeons and the transplant doctors thought. At rounds there was a very large team – all talking about what to do about this kid that keeps fooling us into thinking that she is doing okay. The surgeons had discussed it and they didn’t want to go through with a cardiac catheterization – they didn’t see the point. They knew that they would find a problem with Laura’s coronaries and there was nothing more they could do to solve it.

The impossible surgery had been a success – if it didn’t work, nothing would.

Because Laura had been assessed for transplant back in October, all that was required now was to list her but there were a few concerns. The transplant team did not feel comfortable listing Laura before we had a better idea of the damage to her lungs and the damage to her brain. Lindsay, being the strong advocate for Laura that she was, was very frank in telling the doctor that was on service for transplant that she was fine – her lungs would recover and her brain function would be good. They wanted a CT scan of her brain but Lindsay raised the question that if they hadn’t felt the need to do one after her 90 minute arrest, why were they so insistent after 37 minutes? Laura had been waking up (not on purpose…) and she even smiled at one of the nurses. That’s right – she smiled while on ECMO – what a trooper.

We met with the transplant doctors later that morning where they explained the risks again – she may not make it to transplant, she could reject the heart, she’ll need lifelong medications, the life expectancy with the first transplant is about 25-30 years, her neurological function may never be 100%, etc. We understood the risks and consented to her being listed.

Later that day, she was listed status 4 – the highest status.

Being listed was only the first step – it allowed us to breath a little because it was the hope we needed – there was no fixing Laura’s heart so without a transplant, she would die. Now, we had to figure out how to get Laura to transplant. It could take 1 day or it could take a year- there is no way to know and frankly it’s a hard thing to wish for – do I really want to hope and pray for the loss of another child?

The decision came quickly – she would be placed on a Berlin Heart EXCOR LVAD as soon as she was stable enough –

this should give her the chance not only to live, but to thrive.

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