It's Me, Lucy!

16th June 2020 -    we arrived back on the ward where it all began 6 days ago! Lucy still had two chest drains and was still on oxygen at this point but moving to the ward is always a step in the right direction! We had talked about how we always ended up in the same room on the ward and wondered if the same would happen again! It didn’t and my irrational self took that as a bad sign! A few minutes after we arrived though Adam mentioned that he could smell smoke! This resulted in a change of room (yip, we did end up in “our” room), the fire alarm being triggered and a ward full of Firemen, much to the delight of the Nurses! What a welcome back! We stayed on the ward for a further 6 days. Lucy was still struggling to get up and about, her chest drains were still full and she was still vomiting any time she ate or drank! I lost count the amount of times I had to clean her up and change the bed at the same time without any help! This was the first time I’d felt let down by the st...

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 t...

11th June 2021 - Adam and I had breakfast in the hospital restaurant. It was around 9 a.m. at this point and we knew surgery would last well into the afternoon. We had a room in the hotel across the road and so we headed back there so that I could shower.  We then wandered around the local Sainsburys and Dobbie's, hearts in our mouth, tear stained faces but with no where else to go (everything was still closed at that time). We could have gone home given that we only live 40 minutes away but any more than a few minutes was too far for us. We spent the rest of the afternoon wandering aimlessly around the hospital. Time was going on and although they had told us Covid procedures meant surgeries would take longer than normal, panic was beginning to set in.  We hadn't heard anything at all since 8.30 a.m. and by about 4 p.m. it was all getting too much to bear.  We sat downstairs in the main hospital atrium, watching people come and go as clinics ended and things got quieter....

10th June 2020 - Lucy and I arrived on the ward. We were given a room at the very end.  I was feeling so overwhelmed and struggling to hold it together for Lucy’s sake when one of the ward Sisters arrived.  She could clearly see that I was struggling and suggested a Student Nurse sit with Lucy while we had a "wee chat".  She didn’t really have anything to chat about but I was so grateful for those few minutes to just let it all out and compose myself before going back to Lucy. Over the next few hours, Nurses popped in for this and that, dinner arrived and then the Surgeon, consent forms in hand. Lucy’s Surgeon is the kindest most gentle man. He immediately makes me feel safe and the fact that he performed Lucy’s first surgery was so comforting. We had a chat, signed the forms, talked about the risk of death and then he was gone. Just like that. I’m sure they don’t hang around long enough to make any emotional attachment on purpose! Lucy and I spent the rest of the night p...

 17th December 2019 - We arrived early in the morning to the Children's Hospital so that Lucy could undergo a cardiac catheter. This would allow the Doctors to decide when would be a good time for her second open heart surgery (as if there is ever a good time).  We stayed at a nearby hotel overnight to make it a bit more of an adventure for Lucy as she was getting that bit older and starting to understand more.  When we arrived that morning we were told there were no beds in the PICU and so Lucy's catheter might not go ahead however while we waited, we were invited to sign the dreaded consent forms in preparation.  This is a job that somehow always falls on me and I've talked before about the guilt this brings with it.   A further chat with the Consultant and we were finally given the go ahead for theatre.  We were given a room and changed Lucy into her wee hospital gown.  We explained that she was going to get some superhero medicine that would g...