Dr Starnes, cardio surgeon, met Reuben and within minutes, the date, this Thursday was set for major heart bypass surgery. The risks are obvious and moderate and frightening and yet watching Reuben search for a basic necessity such as breath is just too much. All his energy is expended on breathing so he's unable to put on weight and is back to his weight of 5 weeks ago. On arrival today, we knew he had to be re- intubated. We celebrated Friday's extubation because that's what it's like with Charge syndrome. You celebrate every positive step as a victory, knowing the next enormous challenge lies only moments away. We know each blow hits us like a tsunami and yet like Reuben, we just have to get back up again. Dad says he's like Rocky Bilboa. We celebrate every day of Reuben's life. The sweetness of his face makes my heart ache. I look at him and he's like a mirror image of me.
In summary, the heart bypass will correct the following: - Ventricular Septal Defect (large hole between left and right sides of heart) - PulminaryStenosis (narrowing to lung) - Patent DuctusArteriosis (blood vessel that failed to close after birth) - Coartation of Aorta (narrowing in aortic valve)
We knew this date would arrive one day. On Saturday 18 th August, Reuben will be 1 year old from the day he was conceived.
We ask more than ever now from the bottom of our hearts for all your prayers and thoughts for our beautiful boy.
Catherine, Jason & Reuben
PS: Yes, the surgeon who was purpoted to not want to treat Reuben. We cleared that up very early on. He was badly misquoted and it did us all a great disservice. He knows we know the risks. He knows we know the challenges ahead in terms of growth and development and we were able to quote about the finest examples against all advertisity from direct experience at the Charge conference. He was given a poor picture of Reuben's cognitive abilities, sensory loss and medical complexity and changed his mind completely upon seeing Reuben.