An update...

First of all, this is Lee writing tonight. It may not be as informative as Kris' novels, but you can use that spare time to enjoy a quick Mexican vacation. Please also understand I have a short memory so any of these events could be out, either way, by 24 hours or more. I have also not read the previous blog in a few days and have no idea if I'm repeating what Kris has already done.

Cory came through his surgery beautifully on Sunday. It was a 4 hour procedure and I'll try to explain it as best I can. "This thing in his heart was no good and had to be replaced."

Actually in his first surgery, they had to connect the descending aeorta to the corrotted artery which are different sizes. To facilitate this, they use a patch to cover the stitches and joint. In Cory's case, the patch was a fraction too small and with some additional scar tissue buildup was creating uneven pressures ( 30% difference ) on opposites sides of the join. We had hoped it could be rectified by a simple balloon through the artery, but nothing's ever easy for us. It's also something that could have been caught during his second surgery and fixed then had they known it existed at the time. Just our dumb luck.

After surgery, he was wheeled back to the PICU with, as usual, his body full of tubes, hoses, IV's, chest and breathing tubes. They brought him out of sedation within a few hours but kept him "snowed" for comfort sake. The first night and next day were relatively uneventful, just an obscene amount of drugs and fluids, just like college!

Tuesday morning, he has his breathing tube removed which is a huge thing when he's been unable to breathe on his own for almost three weeks now.

Wednesday he got moved to a ward on the 4th floor ( not that the floor means anything to anyone else ) and Cory went from a happy contented little man to crying non-stop all day long. Initially it was was just blamed on the transfer and the fact he hadn't really moved or been out of a bed in weeks.

Kris and I were hoping he would have his chest tube removed before he went, if not right away as we arrived. Unfortunately he has some leakage from his lymph nodes showing up in his drainage tube and they were unable to do anything until that was taken care of. While we knew ( suspected ) that it was the source of his discomfort, after all it's imbedded 8"in his chest, we were unable to get the green light to pull it. S0 they amped up the morphine and hoped he would get settled. He never did.

For the better part of 24 hours he never slept and cried continually. The doctors suspected it might be morphine withdrawals, might be pain. No-one really knew for sure. But as they poured more morphine to him, withdrawals were obviously ruled out! Numerous doctors came and went all night but had no idea, outside of the chest tube, what the problem could be. Finally Kris got him settled at 5:00 a.m this morning and got her only hour of sleep.

First thing this morning, the surgery/cardiac doctors did their rounds and concluded that the chest tube had to be pulled. Out it came and off to sleep Cory went. The change was virtually immediate. He had a great day, slept most of it as expected and even had a few smiles for us tonight.

Kris and I just went for a late dinner and they back to the hospital for the night. It's almost 10:30 and they've just out another IV in Cory's head as his veins have all put up a closed sign and are having no part of being poked again. He's got two or three other ones, so I'm not sure why this is necessary, but I just listen for my name around here.

Cory is doing awesome. Three open heart surgeries, two heart catheters, literally dozens of x-rays, CT scans, ultrasounds and echocardiograms not to mention the hundreds of pokes, IV's and tubes he's had inserted into his tiny body the last 9 months and he still fights and amazes us every single day. This kid has earned his blue bike.

Thanks for all the support and well wishes. There have been as many days of desperation, shock and utter fear, as there have been of joy and celebration, but still, we feel incredibly fortunate that better days appear to be on the horizon for us. We truly have been blessed as we have met many families through this "adventure" who's babies have also endured countless operations and unspeakable pain and may still never get to leave this hospital. It gives one tremendous perspective.