What a mess. Y'all can't imagine the feelings that both Kevin and I are feeling. Today has really been a terrible day.
First, it turns out that the surgery did not correct the fluid problem - at least not at this shunts flow rate. When I went in this morning, Kevin's head was quite huge again - ON TOP OF THE FLAP!! I was under the impression that no liquid would be able to escape and the flap would keep it all inside forcing the shunt to work. Obviously that's not the case. His whole face is even swollen with fluid.
Second, although the shunt is programmable - NO ONE HERE KNOWS HOW TO WORK THE FLIPPING THING!!!! Literally! The doc and a company representative tried twice today to reprogram it to a larger flow rate and it won't work. I overheard them saying that they had texted a supervisory rep and they may have to have that person fly here to show them how to work it. In the meantime, Kevin has had multiple x-rays of the shunt in the hopes that they can figure it out by looking at the films.
The docs also released us to go back upstairs to our normal room and I am so glad because...NO ONE IN ICU NOTICED THAT KEVIN NEEDED BLOOD!!! When we got back upstairs, our normal nurse was looking at his labs and called the doc immediately. The transfusion is currently on it's second unit of blood. I kept questioning all night last night why his vitals were up, but I was ignored. It turns out they were an important sign for low hemoglobin. I wish I had talked louder last night.
Needless to say, Kevin has been crying all day. He realizes that the surgery didn't fix the problems and has only created new ones. I have tried to pull his spirits up, but it's hard to when I feel the same way. He did have me lay in bed with him this afternoon and we just held each other and cried for a long time. But then, we stopped and I told him that yes, everything pretty much sucks right now, but that there is a reason he is still alive after everything he has been through. I told him that we are going to fight all these issues and then kick butt to go the hell home. He agreed, but we will just have to see if things start working out or not. If they don't, I really worry that he will give up. I have felt him wanting to all day, even after our 'talk'.
This is just so damn hard. For both of us...
First 2 from the Nov kit!
4 years ago