Post by Bobfromacctg on Jul 22, 2008 9:26:08 GMT -5
Last thursday, my 21 year old son had bladder reconstruction sugery. His bladder has shrunk to the size of a walnut (born with spina bifada) and so this was necessary to build him a larger "bag" so to speak. They took 18 inches of his small intestines and created an expandable top to his bladder.
The surgery was 10 hours in length and while I have done that numerous times over his life, I never get used to it. Add to that that now I am divorced and the whole issue of being "out of the loup" is killing me. I am 2 hours away and am driving back and forth to see him. Two trips on the weekend and am going back tonight. My X will not return my calls or explain anyhing that is going on. Fortunatly, my sister (who is a nurse) has flown in from California and has spent the entire time at the hospital. She has been my eyes and ears during this time.
Its killing me. I have always been a VERY hands on father and to be this far away is simply more than I feel I can stand. I know its temporary and that this too will pass but until then...
tonight I am drving back down to the hospital again after work. I will only be able to spend an hour or so before I have to turn around and come back home. I just want to make sure he knows that I love him and would be there if I could.
Watching him recover and adjusting to the pain has been awful. His eyes can look like those of a scared horse - large white areas around the pupil. When that happens, my stomach turns. His pain tolerance is incredible so when he says that he hurts, it means that HE REALLY HURTS. He doesn't complain, he just accepts and moves on.
The surgery cut through his abdomen muscles and as a parapalegic he uses those muscles to do EVERYTHING. Its so painful for him.
We have been hoping to avoid this surgery for 10 years but were not so lucky. When he was about age 10, we spent a month in the hospital in Chicago to do bladder stimulation therapy. It had incredible results but due to insurance considerations, we were not able to continue the process. That would have prevented the need for this surgery. At least we tried - thats all I can say.
In the middle of the surgery, the physician called us and said "Its worse than I thought and we need to go ahead and make a permanent drain to the outside wall of his abdomen. Do I have your permission to do this?". OMG what could we say? It was a decision that we had to make on the spot without discussing it with him and we knew that the decision we were about to make was contrary to what he wanted. He however, could not understand (during previous discussions) why the surgeon said this may be necessary. So, we had to go with the surgeon and trust that Benjamin would understand. So far, that has held - but who knows what will come when he is of clearer mind.
Its just so hard and so tiring. I have been in this situation for now 21 years. I keep telling myself that my legs work so I need to get over the emotions I am having to deal with. He has faced this his whole life PLUS survived cancer.
The following link is that of Nancy (the woman I am seeing), two of my children, Benjamin and Christopher with theise associated girl friend and wife.
www.jamesgrier.com/pictures/all_of_us.jpg
The surgery was 10 hours in length and while I have done that numerous times over his life, I never get used to it. Add to that that now I am divorced and the whole issue of being "out of the loup" is killing me. I am 2 hours away and am driving back and forth to see him. Two trips on the weekend and am going back tonight. My X will not return my calls or explain anyhing that is going on. Fortunatly, my sister (who is a nurse) has flown in from California and has spent the entire time at the hospital. She has been my eyes and ears during this time.
Its killing me. I have always been a VERY hands on father and to be this far away is simply more than I feel I can stand. I know its temporary and that this too will pass but until then...
tonight I am drving back down to the hospital again after work. I will only be able to spend an hour or so before I have to turn around and come back home. I just want to make sure he knows that I love him and would be there if I could.
Watching him recover and adjusting to the pain has been awful. His eyes can look like those of a scared horse - large white areas around the pupil. When that happens, my stomach turns. His pain tolerance is incredible so when he says that he hurts, it means that HE REALLY HURTS. He doesn't complain, he just accepts and moves on.
The surgery cut through his abdomen muscles and as a parapalegic he uses those muscles to do EVERYTHING. Its so painful for him.
We have been hoping to avoid this surgery for 10 years but were not so lucky. When he was about age 10, we spent a month in the hospital in Chicago to do bladder stimulation therapy. It had incredible results but due to insurance considerations, we were not able to continue the process. That would have prevented the need for this surgery. At least we tried - thats all I can say.
In the middle of the surgery, the physician called us and said "Its worse than I thought and we need to go ahead and make a permanent drain to the outside wall of his abdomen. Do I have your permission to do this?". OMG what could we say? It was a decision that we had to make on the spot without discussing it with him and we knew that the decision we were about to make was contrary to what he wanted. He however, could not understand (during previous discussions) why the surgeon said this may be necessary. So, we had to go with the surgeon and trust that Benjamin would understand. So far, that has held - but who knows what will come when he is of clearer mind.
Its just so hard and so tiring. I have been in this situation for now 21 years. I keep telling myself that my legs work so I need to get over the emotions I am having to deal with. He has faced this his whole life PLUS survived cancer.
The following link is that of Nancy (the woman I am seeing), two of my children, Benjamin and Christopher with theise associated girl friend and wife.
www.jamesgrier.com/pictures/all_of_us.jpg