Visited Dr. Alam today... (urology)

Sigh... I don't know exactly what we accomplished. We were in Cincy from 7 am - 5 pm and MAN that was a long day. Ky was cranky and pissed off... with good reason. Our main issue is that the Ditropan we are giving her to protect her kidneys and keep her bladder from having so many spasms (when she reaches 30 ml of retention she has immediately starts having "pretty hard" contractions) is probably also adding to the colon issue. At the very least it is NOT making it any better. The good news is that her kidneys have not gotten any worse. Dr. Alam had not had a chance to look over the scans completely so he did not have a full assessment. We decided to try and do the Ditropan through the cath and straight into the bladder and hope that effects less of her system than by mouth. She is also on a Foley cath this weekend to get an accurate urine production count. We just want to see exactly how much she is making....

Dr. Alam could tell that we were VERY frustrated with the whole urology thing. I don't know that I am so frustrated with the urology but with the fact that this "thing" this VACTERLS thing continues to drag on and on... and on......................... and ONNNNNNNN..... Every time we finish up another part like the colostomy we continue thinking that we will feel some kind of relief from this overwhelming sense of "drowning" but all too soon it is filled back up with something else that promises to be more frustrating and longer lasting that the last issue. That is what brings on the hopeless feelings. The knowledge that no matter how hard we try, or what we do, or where we go, or who we talk to... there will always be something else ... waiting around the corner and ready to strike and cause yet another disaster of which we will have to deal with the fallout for years to come. Dr. Alam even told us today that EVENTUALLY it will get easier. Maybe never better.. but easier to deal with ... and that someday is probably not coming anytime soon... it may be years. GREAT. (((((((Sigh)))))))

At this point. I swear... I think we are canceling the neurosurgery altogether. I have now talked with exactly 5 neurosurgeons and fired two before i even met them. I think that maybe this whole surgery is just not right for her. Seems that every time we try to FIX something we just make something else worse. The neurosurgery scares the crap out of me. I always knew that if her heart were to get "messed up" that would be the end... but this neurosurgery... one wrong move and she is in a wheelchair and I am wiping up drool for the rest of our lives. That is a thought that I cannot handle. As a mom who only wants her princess to grow up happy and healthy and enjoy life... It make me instantly have a panic attack. Instantly I feel as if I could loose my lunch and pee myself all at the same time. I watch her walk and talk... she babbles and is trying to READ books all by herself. What if, in one single surgery, all that is taken from us? Would it not be better to wait and let it happen slowly... if ever..... (((((((Sigh)))))))

I have already bought "the neurosurgery dress" but I can return it. Or I can turn it into a 1st / 2nd birthday dress... it will still fit her then I believe. Maybe this is just a knee jerk reaction but SOMETHING still does not feel right about this surgery. Maybe its just the timing... maybe she really doesn't NEED it. I mean everyone we talked to said... in any other kid they would recommend no surgery. But for Kyleigh............. I am SO sick of hearing that. I would like for ONCE for my child to just follow the rules. I would like for once for something to be set in stone and actually work out the way we plan. I would like for ONCE to NOT have to make the decision ... I would like for someone else to tell me what to do.... and I promise I would gladly do it. (((((((Sigh)))))))

Tonight I sit here and my head is just reeling and the only thing I can do is sigh............ I wonder if it ever gets any easier and the sad fact is that I know the answer.... deep down I continue to hope but each day it gets a little less and a little quieter in my heart and mind... each day is one day closer to having to face the fact that this will never be over. How do you do that? How do you accept that and come to terms?... if anyone knows... please share.