I have paypal, my sign on name is
Christoph281@hotmail.com
im not sure if there is a link or something else that is supposed to be used, im not too good at paypal but that should be it i believe.
Talked to the doctors today
Things are starting to get real scary.
Either we do the surgery now, we do it later, or we dont do it.
One of the flaps in the replacement valve is stuck shut. It will remain this way unless it is replaced. So far he is doing ok, they do not know what to do. There are a lot of factors to add into this.
First off, he may be fine with the valve AS-IS for th next 10 years. It is impossible to tell.
The other flap may also get stuck, it is once again impossible to tell. If it DOES get stuck and it is in the open position it will cause a lot of regurgitation back into the ventrical. He will have similar symptoms as before and we will see these, bring him in, replace the valve and hope for the best.
The flap may also get stuck in the closed position. In which case he will die almost immediatly. It does not matter if he is in the hospital in the Cardiac ICU, if this happens he WILL die.
Surgery. Well, shit, it would be the 2nd open heart surgery in an infant that they still consider too small even for his first surgery. He will have more scarr tissue, the surgery may or may not be able to replace the valve. They MIGHT go in there and find that there is too much damage to the area to replace the faulty valve and have to hope that this one lasts him. They might be able to go in, and swap it out without a problem.
risks risks risks.
So, our cardiologist believes we should try waiting it out a bit. Our surgeon origionally figured he better get back in there and fix this.
The Main problem here is logan has now had 2 issues that are VERY rare, first the heart valve problem is very unique. The failure of the valve is also rare.
My cardiologist said the best they could find through research is some kid in france had something similar. His valve got stuck open after 18 months. they replaced it, and records dont say much after that.
So, the doctors are not sure what to do. They asked my wife and i what we would like to see done, i advised that we would deffer to any decision that they make, and that they have the experience and have the best answer. Then she said they did not know what to do. The doctors are divided into 2 camps, the ones that are for immediate surgery, and the ones who think it is way too risky and we should wait and see if it eventually gets stuck open and hope he lasts long enough to get the surgery later.
so... the decision may very well fall on us.
There is no RIGHT decision, and no WRONG decision.
We are unified in our thought that if the doctors cant agree on one course of action over another, that we will opt for the surgery. We have to face the fact once again, that our son may not make it. We have to look at this logically.
If my son were to die, i would rather it because we took action to correct the issue. Rather than just waited to see if he would die or not on his own. I couldnt even begin to fathom waking up in the middle of the night and checking on him to see the worst has happened, and having to wake up his mother and tell her what happened. We cannot sit and do nothing. If we wait and he dies, we would never forgive ourselves. If he dies on the table, well dammit at least we did what we could.
needless to say things are getting pretty heavy right about now.
we should hear back from the cardiologist and weather or not they have come to a unified decisive decision we we would deffer to, or if they need us to make that decision.
Will keep everyone posted.