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.
(((Jenny))) I am so sorry that things don't seem to be going Buddy's way. It's the hardest thing in the world not to be able to "fix it" for your child. I've been there many times. I'm saying prayers that Brayden will have a kidney really soon! Emotionally this is all just so hard. (((hugs again)))
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