Hi Lois, yes my dd has CHD. I do sympathise with you, the waiting is just the pits and it's so stressful getting cancelled; you don;'t want them to have surgery but know it must happen and yes bleurgh just about covers it. It seems that cancellations are happening more and more because of pressure of PICU beds.
He's only 17 months and luckily for him and us totally oblivious. one of the reasons for the second cancellation was no picu bed. when it gets cancelled I feel relived yet like I'm waiting for the inevitable. its weird can't describe it. He's not desperate for it just his weight gain has stalled and other minor things. I'll be glad when I don't have to count calories and worry about his eating tbh. sorry just rambling now.
My DD (1yr) had her PDA repaired in September. The waiting was awful! I spent everyday expecting her to collapse in a heap. We're still on meds and high calorie milk due to leaky valves but are seeing her cardiologist next week for an echo and review. I'm getting nervous already!
wallace vsd repair here too and hopefully no more ops after bar complications. I also panicked when they rang the first time for a cancellation slot, think i was shocked i said um eh can i ring you back! Been to specialist again just fior a check didnt get echo do as he wont stay still. dicdic nurse we are going for op soon hopefully and then on to a dietician as hes tiny for his age and his weight is static so ia sked for a referal. Does the worrying ever end? First if they hjave any genetic chromosomes problems then how they after birth. Then comes is he blue or is he eating enough. Its pants. Although once i was convinced he went blue around his mouth till my DH pointed out he had been chewing on his sock and it was dye