Tuesday, June 10, 2008

More trouble for Miles' ticker

We got some more troubling news from Miles' cardiologist today. She diagnosed him as having Right Pulmonary Stenosis ( http://www.americanheart.org/presenter.jhtml?identifier=1321. ) Immediately following the news, she chortled and said we probably never thought we would learn so much about medicine. And know she was trying to be nice, but I wanted to slap her. To her defense, there was no harm intended- her timing just stinks. It just that my heart has become so heavy worrying over my son's heart. The doc said a stint can be placed during the surgery for Miles' VSD ( http://www.americanheart.org/presenter.jhtml?identifier=1306 ). I broke down after the doctor left the examining room. Thank God Jesse was there! The hardest part of the visit was hearing about where Miles' will be post-op- in the PICU (pediatric ICU), and that we can only see him for a few minutes at a time with only 1 or 2 people going in. His room will be in isolation- no roommates. The thought of my tiny little man hooked up to tubes and wires, all alone in a cold ICU room is too much for me at the moment. Knowing I won't be able to hold him as he recovers has me in tears right now. We will know for certain when the surgery will take place by the end of this week; it will probably be sometime in July. I really wish July would get here so we can put this behind us. The surgery, though I dread it in some regards, will ensure a much stronger and longer life for Miles. I am very "pro" surgery, and I am becoming very "con" waiting for surgery. Waiting for the surgery is turning into a real struggle; I am always on constant look-out for cardiac failure, for signs his heart is starting to fail. It is hard being strong for your son when you are so scared on the inside. Fear aside, Miles is still growing at an amazing rate. His weight and strength astounded the cardiologist- she sees no external signs of cardiac distress. Looks like all the distress is coming from me.

2 comments:

I'm Jennifer said...

I'm so sorry for yet another challenge you've encountered while preparing for Miles' surgery. It's completely understandable that you feel the way you do; even with your fears, I know you are being strong for Miles. I'm sure he senses nothing other than loving devoted parents he can rely on. You're all constantly in my prayers; especially that July will get here super fast!

Cynthia said...

We were not allowed many visitors, but we insisted we would be with our son when he was in the PICU. We took shifts, so someone would always be there with him, night and day. It is better for your child, knowing mom or dad are nearby, even if you can't hold him. It is better that you know what is happening. That first time you get to hold him afterwards is so amazing for you and your child. We even saw the difference on his monitors, he felt better in our arms. If you really want to be there with him, it is worth fighting for!