reality check

I read email last night before I went to bed, what I found certainly did not give me sweet dreams instead I wanted to throw up, I get that feeling still today when I think about it. A little boy from the WS email list went in two weeks ago for a cardio cath. The doctors wanted a better look at his aorta, it seems to have gotten smaller. Shortly after the start of the procedure his blood pressure dropped out, his heart stopped he was stabilized with the help of life support. The doctors decided to open him up and fix the aorta, although he breezed through that part, Gage's poor little heart stopped two more times. Sometime in the midst of everything he had a stroke, like all that other stuff was not enough. I cried when I replied back to Jessica ( Gage's Mom) via email. The weirdest thing was that I was telling Chris about Gage on Sat. night . . . We were watching some car show on the speed channel and Jay Leno was talking to a man named Gage . . .

I cannot imagine Gage or any one of these other babies I have gotten to know in this situation. When we left the hospital after Tatum was born I figured that was it no more hospitals. As I learned we would have more hospitals I figured it would never get that bad again. So far we have been lucky . . . those few tubes and wires used for the cath is nothing compared to what I have seen Tatum hooked up to, I know many other parents have been there too. It is something you just don't wish on anyone . . .

As we get ready for Tatum's eye surgery, I am sure I'll be very relaxed . . . as if we were not torn about it to begin with . . . yeah right . . . I am doing my best not to think about it. It is something that needs to be done and now is as good of time as any.

Tatum has some unique heart problems. Most of her vessels are smaller but the main issues seem to be the stenosis of her entire descending aorta . . . The stenosis in the branch pulmonary arteries are not so good either but they at least started growing. The cardiologist from CHOP pretty much agreed with the current care that Tatum is receiving. He phrased his input a bit differently so it would seem different but smoke and screens . . . I am onto it and over it. Bottom line is Tatum's aorta has to grow. Until then there is nothing they can do but monitor by echo and caths intervening when necessary.

I have decided that while we wait for growth I am taking this unique heart problem on the road . . . Dr. Mervis has helped put me in contact with Dr.Morris. I have shared with her Tatum’s heart records in hopes that she may have seen her heart problems before or know a doctor that has. Dr. Morris has been researching and working with WS for many many years.

Gosh I have been so busy I forgot how nice it is to just sit down and type...Kind of sorts everything out...Hope everyone has a good Wed.