My son was born with TOF, had surgery to repair defects at 10 weeks old... he is now 5 and needs to have a pulmonary valve put in. My wife and I are SO stressed out about it... the more information I can get the better our minds will be. If we know what to expect it will help... Have there been any fatalities when a child receives a valve? He will be in Boston Children's with Dr. del Nido as his surgeon. What are the complications we "could" expect? How will he look after surgery when we first see him? (at 10 weeks he looks awful, all swollen with wires, tubes everywhere)
Will he wake up slowly and in alot of pain? They say he will be in ICU for 2 days. How long before they get him up walking? What will hurt him more the fix or the sternum? Any other info you have will be greatly appreciated.
Thank you so much
Each center manages their patients a bit differently and each center has their own track record with regard to mortality. I would recommend that you contact Dr. del Nido to discuss the specific outcomes and management course for your son and his valve replacement.
My son is due to have a surgery like that in a few years when the valve gets too bad.He had surgery at 8 weeks old and looked awful too.He was paralysed because of all the tubes and ventilator.I feel for you and will be praying for your son and your family that he pulls through this.Please keep posting after your sons surgery so then you can help other parents as to what they can expect.We will be thinking of your family.
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