At the beginning of course. The last three days have been a whirlwind. I finally contacted Dr. Shumyle Alam in Cincinnati about Kyleigh Urological issues. As you can see from the last post he was more than prompt in responding and getting things going. Debbie who works with him managed to get our Urodynamics, bloodwork, Kidney US, and VCUG scheduled for less than 24 hours later!!!!!!!!!!!!!!!!!!! Well of course when someone offers to give you answers about your child you say yes… you drop your life and go.

So we went. We had a full Urodynamics scheduled at 10:30 am, Bloodwork at 12 noon, Kidney Ultrasound at 1 pm and VCUG. We didn’t even get to leave the hospital until about 4:30 pm. By that time I realized that Dr. Alam was going to want to see the VCUG from UK… so I had to call Joe (poor guy….I must bug the living $hit out of him) and ask him if there was anyway to get that in under 12 hours. So of course, Joe, wonderful as always, told me how to get it. We got back to Lexington at 7 pm and went straight to pick up the CD at the film lab.

Then today we went BACK to Cincy to meet Dr. Alam. Evidently something was lost in translation to us because we were told to be there “tomorrow” which would be Thursday but really they meant Friday. Dr. Alam was in surgery. GREAT… awesome… wonderful. They called Dr. Alam and he said he was more than happy to see us today. And truly he was. He came into the room with a smile on his face. Then he sat with us for more than an hour explaining every little detail. He was too funny. He even apologized for being in scrubs and not “clean shaven”. Like we really cared!! LOL I am the one who looked like an idiot. Got ready to take a pic of him and Ky and had the stupid camera on timer. I just picked up a spare on the way out the door and didn’t check the settings before I went to fire. geeeeez……

Really if I had to hear the news I was going to hear I am glad it was from someone who was smiling.
Good news: We managed to catch these issues fast enough and begin cathing… that we have now STOPPED the kidney reflux before it began to damage her kidneys.

5% Kyleigh strikes again! Kyleigh has THREE kidneys. Yes the normal human being has two… my kid… three. This explains a lot about why she chews through pain meds and sedation so fast!! Technically she has a Renal Duplication Anomaly. She has a duplicated upper and lower lobe and it is pretty much self sufficient.

Her bladder is really a mess. Her pressure is off the charts. A normal child her needs a pressure of 20 to void, at 40 it begins to cause kidney damage. Kyleigh’s pressure is 160. Yeah… the pressure in her bladder should only hit that magic number “20″ when she is FULL (70-80CC). Ky’s hits full at 12CC. To fully “empty” her bladder we would have to cath her every 90 minutes which we all know is humanly impossible! So Dr. Alam has put her on Ditropan to try and keep her emptied.

Also… her bladder should hold 70-80 CC Kyleigh’s holds 150. So her bladder is a bit stretched and scarred already. She is also having bladder spasms pretty much all the time. This could account for constantly grunting and moaning. With the urodynamics test there should be a normal bell curve showing the building up to contracting of the bladder – at the peak it empties… Kys… looks like a heart monitor strip. Peaks and valleys all over the place. There was not ONE inch of smooth line on the entire strip.

All of that can be dealt with. There really is no “fix” to this ordeal but Dr. Alam is working on it. He is leading the way in researching this for IA Patients. I had no idea but he actually remembered Kyleigh he was actually in the OR during Ky’s PSARP surgery with Joe and Dr. Levitt in August!! It was cool that he remembered. We really are blessed to have found another gem of a doctor!

Now… the bad news.
Today we also found out that our child probably has less than 10% chance of ever being continent. More than likely our princess with cath herself for her entire life. Dr. Alam said that we should look forward to the future and maybe in 10 years or so we will be able to reconsider our options but for now… we will cath to make sure she doesn’t loose her kidneys. Troy still thinks that our 5% Kyleigh HAS to play in our favor somehow and that she will be continent someday but for me… I am holding out little hope. Dr. Alam specializes in this. I could see it in his eyes…. more than likely no. It was one of “those” I am sorry looks… seen that one before many times and it sucks.

So today is a hard day. That dream of normal for Kyleigh keeps slipping a little further away. And yes I know… we will make it… she will be great and strong and all that other stuff but for today I am sad. I am allowed to be sad. For many parents this would be devastating news. For us its just another day and another issue to get a plan to deal with. But at least we KNOW. Knowing is half the battle. Well hell its still pretty devastating to us too.

So today I will mourn, once again, the loss of that dream. Emily Pearl Kinglsey wrote “The loss of a dream is significant” and its so true. Every time we find something new and some other issue the grief process starts all over again. I allow myself 24 hours to be sad and pissed and all that stuff. I need that time to grieve and I am entitled to it. Tomorrow I will begin my research and proactive approach. I will get back on my soapbox and start preaching again. But today I will sit beside that little box of mine and cry.

Thank god its Grey’s Anatomy night.

Here’s a pic of our newest amazing doc… Dr. Shumyle Alam and Ky… I am gathering these pics for her website!

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