- Ventricular Septal Defect - the large hole between the lower ventricles that was patched with his heart's outer membrane
- Atrial Septal Defect - the small hole between the upper ventricles also patched
- Pulminary Valve - the narrowed valve to the lungs was dilated
- Coarctation of Aortic Valve - the narrowed valve that brings oxygen rich blood to all organs of the body was dilated
- Patent Ductus Arteriosis - the valve that should have closed after birth was ligated
These defects lead to Reuben's congestive heart and the need for his cardio bypass on 20 August.
Last weekend was a tense time. Thanks Erica for helping me through it, yet again! We hope his heartbeat will steady out and that he can eventually be weened off this additional med. I asked the electrophysiologist if a pacemaker (meaning another cardio bypass) would be the worst case scenario and he said "You don't want to know the worst case scenario". That said, a pacemaker couldn't actually fix the arrhythmia and either the beta blocker can be weened in a few weeks time or Reu will have the arrhythmia for life.
It's a sad realisation, that perhaps, once a cardio kid, always a cardio kid. After yesterday's horror which has kept me up through the night, Reu is now in a room of 4 with a nurse in the room at all times. And in the bed next to us is sweet Marcio whom Dr Starnes performed his magic on also on 20 August and then discovered he had 3 valves so had to go back in again for a second bypass.
Remember too, my friend Vivian whose baby Carlos (di George syndrome) was admitted on 12 July as was Reuben and we were next door neighbours for 2 months? Well, after several weeks on the floor after discharge from the PICU and watching Reu go through the bypass and then the trach, Carlos's health hasn't been improving and with infection after infection, cold after cold, Dr Starnes suddenly decided to operate on Carlos next Thursday. Vivian called me because she knew we'd been precisely there. Congestive heart failure is all you achieve through waiting for a bypass.
I kindly ask for your thoughts and prayers to pass onto Vivian and Peter, who, like Jason, has been there day after day, week after week, month after month, whilst juggling the demands of their sweet 2 year old daughter at home. A very lovely family!
2 comments:
I am so sorry you had such a hard time the day before yesterday. I am hoping as happened with us life will get much easier when you get him home and don't have to rely on other people. It is so frightening and you should never have to suffer that when you have left him someone elses care. I only read up today as I didn't log on yesterday properly. I hope you can wean him off the beta blockers.
Take care, SarahX
wow at least u have some answers hope the meds will help his heart love u
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