See you soon daddy... the wait continues
Posted August 19, 2014
Steve and I met with one of Porter's transplant cardiologists yesterday and asked her about the results of Porter's cath and her feelings about his condition. She clarified the cath results and said Porter's heart has two things going on that contradict each other in the treatment available. When they give him the diuretics and dry him out, the obstruction is worse, with more fluid on board it is better. However, when he has more fluid on board the restrictive characteristic of hiscardiomyopathy present themselves which impairs the diastolic function of his heart and the fluid goes to his lungs causing his breathing issues. She said its about the worst combination of problems to have because its virtually impossible to be medically managed. She said they will see what the surgeon's opinion is on the myectomy. The chief surgeion should be back next week and we'll see if he feels trying the myectomy is going to benefit Porter and buy him a few years with his own heart before he needs a transplant or if it will only help him for a few months. The transplant cardiologist said if the myectomy is only going to give Porter 6 months or so with his own heart then it's not worth the risk and could make him sicker.
Steve and I met with the social worker, infectious disease doc, and the pharmacist today to continue the transplant evaluation. The PT and OT also came in and did the Peabody Motor Development Assessment. Porter did pretty well with the assessment but we have work to do!
It's looking like they'll collect all the blood work and tests over the next week and a half and present Porter to the medical review board a week from Friday. We were hoping it would be this Friday but they can only take a certain amt of blood from Porter every day without causing him to need a blood transfusion.
It's been great having Steve here for the last week and a half, Porter and I are sad to see him go. Looking forward to being together with him and Oliver soon!
Thank you everyone for your continued prayers, donations, fundraising efforts and love!!!