Lean on Me

12th June 2020 - When we woke up, I made Adam phone the bedside for an update! I can't make these calls because I couldn't bear to hear any bad news which is totally irrational as they would have contacted us first!

I arrived in PICU at 7 a.m. I couldn't bear to be away from her any longer. They had hoped to bring her back from surgery off the ventilator but because of her lung pressures, this hadn't been possible.  Although it was only 12 hours since she came back from theatre, I couldn't help but feel that things weren't going to go as smoothly as we hoped.

Surgery days are long but days spent in PICU are excruciating. You are living on your last nerve the whole time, watching screens and numbers and praying the next alarm to sound doesn't belong to yours.  There are 3 other kids in the PICU bay with Lucy. All cardiac kids. And you feel every single bit of what those parents are going through - like a team even though you've only passed a cursory nod their way. Two of those kids didn't make it home. We are eternally grateful that we did.

The Nurses change shifts at 8 p.m. and Audrey, the same Nurse who had been there for her last night, arrived to be with Lucy. Leaving at 10 p.m. was a little easier knowing our girl was in the safest of hands. 

Overnight Lucy had stirred a little more, the sedation was gradually being decreased, and by the time we arrived in the morning, she was able to open her eyes. She was still ventilated and so she couldn't talk but the sadness in her eyes broke my heart. I couldn't help but feel to blame. I had let them do this to her. It was my fault she was suffering.

Each time she would wake up and see me, she would cry. I could see her mouthing "mummy" with tears in her eyes but no sound would come out. This is a sight that will haunt me for the rest of my life. I felt so utterly helpless.

Another long day and a change of Nurse later, and it was time for us to leave again. Progress had been slow. They decided to keep her ventilated however we knew the longer she was on this the worse things were. We went back to the hotel, on the orders of the Nurses, with a take away and heavy hearts.

Three days after surgery, it was decided to finally get her off the ventilator. Usually they ask the parents to leave the bedside for this process however as Lucy was a bit more lucid, they felt it would keep her calmer to have us with her. This can go very wrong and sometimes they need to intubate again and trust me this isn't something any parent needs to see.

I stood at the head of the bed, smoothing her hair and telling her how brave she was.  She coughed as they pulled the tube out and almost as soon as it was out she said "mummy, I really hated that"! The relief in hearing her voice, albeit as croaky as a 90 a day smoker, was unbelievable.  For the first time, we could see some progress.

That evening, Susie arrived as her named nurse for the night. Susie was a typical Irish Mammy! I was so worried about leaving Lucy now that she was awake but Susie played her Disney songs all night on her own mobile and sent us updates throughout to let us know how settled she was. Susie knew exactly what Lucy needed but also exactly what we needed as parents. 

The next day, slowly but surely, wires started to be removed, pain relief was lowered and Lucy was becoming more responsive.  They needed to get her up and out of bed as soon as possible in order to drain the fluid around her heart and lungs and so the Physio came for a visit.  Its not easy to move them when they are in pain and connected to so many machines but between us, we managed to stand her up and move her to a wee seat so she could sit upright.  She leaned on me with her full weight in transition and its absolutely the best cuddle of my life. Her wee warm body pressed against me, head on my shoulder, exactly where she should be!

She was so scared to stand up but she did as she always does, leaned on mummy and fought right through! 

Lucy began sipping some water and eating small bits of watermelon. However everything she ate was coming right back up. They decided to keep her in PICU another night as it wasn't as busy as the ward and she still needed someone keeping a close eye on her. Susie arrived again that night armed with her mobile full of songs. 

I was concerned that Lucy's stomach was looking quite bloated and I mentioned this to Susie. It turned out that Lucy hadn't been peeing enough since her urinary catheter had been removed.  She was unable to get up to the toilet so she had been holding it in scared to pee in the bed pads as she "was a big girl now". 

We left her lying on the bed with nothing but a bed pad but she just couldn't manage. We tried splashing her bits with water and even blowing on her but nothing would encourage flow.  Eventually Susie told her we needed to reinsert the catheter and just as she was about to carry this out, the pee came flooding out with a gush, surprising us all and giving us a laugh at the end of another long day!

Finally, her temperature had come down, her lung pressures were decreasing and she was now starting to make real progress! Tomorrow, 6 days after surgery, we would move back to the ward and I could stay with her overnight again!