Today was one of the worst days ever

Well, we got up at 430, left at 6 and got up to UT at 8am. We went up to see Dr. Malagon at the clinic to check out buddy before surgery and I asked about Kyle's Ultrasound that he had on Friday. His US and CT revealed that he had cysts on both kidneys and one in the liver. Dr. Malagon said that it shouldnt be a problem and we went down to the surgery waiting room. About 11, we went back to the holding room and were hanging out with both sets of Grandparents. Dr. Malagon walked in with this other doc and told us we have to cancel. The other doc was Dr. Rivers who is an adult nephrologist. She is great. She talked to us ( mostly them) for 30 min in the room. I lost it...I mean completely lost it. I ran out in the hall and fell to my knees, punched the wall (yea I know stupid) and cried. In hindsight, the family dynamics were priceless. Kyle's mom was covering her baby, I was covering my baby, and when I lost it my mom covered me. Anyway, we saw Dr. Rivers in her office and sent of a genetic test to see if Kyle has Autosomal Domminant Polycystic Kidney Disease. From what little reasearch I have gotten to do so far ADPKD occurs in 1 in 400-1000 people. 25% need a kidney transplant by age 50 and 75% by age 75. So, if he does have it then we really dont have to worry big time until he is 70 or so. If he does have the gene, we then have to think about if we want to have another kid because there is a 50% chance that the baby would have ADPKD also.
So, we started my work-up today. I got labs, EKG and Chest Xray today. I have a CT tomorrow and a Nuclear Med Test ( GFR) and Renal Ultrasound on Wednesday. Kyle will continue with his workup in hopes that the genetics will be negative.
This hit us super hard. Even though my mom/nurse intuition told me that something would be wrong, we thought we had gotten past it. I think we would have handled it a lil better if we hadnt been RIGHT there!
So, we will not be doing any surgery until we know that SOMEBODY is a match and READY TO GO. Dr. Hill will be out of town the last week of Jan. If we are sure then hopefully we can do surgery the 1st week of Feb.
I try to keep telling myself that God wont give me anything that I cant handle, but I find myself wondering why....why cant something go our way? Why cant my son and my husband be healthy? Why not just pour alcohol into my open heart...just to make it burn?
The only thing that kept me going today was looking at my beautiful son's face and listening to him babble on about the bay-bay-bay-bee all day. He is what I live for.
Thank you all for your prayers, kind words and guidence.

Its 2010 and Im crying again!

I am crying because I am a blubbering idiot! My baby boy is laying on the couch taking a nap, my wonderful husband is watching tv and I am crying. Why? Because I just read that one of our Internet kidney friends got a kidney. Some one gave him a new life of feeling better.

I just can help but IMPATIENTLY wait. We now have a plan and tentative dates. I have patiently waited this whole time, now it is my turn to really worry.

Jan 7th Kyle and Buddy both go to the doctor. Kyle goes for testing and crossmatching and Buddy for the usual. I worry because Brayden has 53 antibodies in his blood. This means that he has a pretty good chance of having a positive crossmatch with Kyle's blood and that would mean that he couldnt have Kyle's kidney. If that happens, then we will go to me but what if I am not healthy enough and they wont take my kidney? The what ifs are killing me!

Jan 18th ( if all goes well with the crossmatch and Kyle's testing) we will take out Brayden's native kidneys and augment his bladder. This surgery scares me MUCH more than the actually transplant does. He will not have any kidneys and there for will not have any way of fluid elimination except by dialysis. This puts him at a much higher risk of fluid overload and other complications. It can be done but being the nurse that I am, I know all of the issues that go along with all of this. Sometimes I wish that I just didnt know what could go wrong. Ignorance is bliss! But then again, we will be able to spot issues much faster since we know what to look for.

I will have to put a catheter into his bladder every night and fill his bladder up with saline so that the bladder will not "lock down" while it is healing. He will have a "dry" bladder since no kidneys are gonna put urine in it. Its gonna suck for a while, but he should get used to it.

6 weeks later, Buddy will have his transplant. They want to give his bladder 6 weeks to completely heal before we transplant so we dont have a risk of infection there.

I am scared to death and happy at the same time. I dread the surgery days but I also welcome them because it is one more step closer to "normal". I look forward to my already happy baby boy to be even more happy and healthy.