GREAT NEWS!!!!!!!!!!! Two docs worked together after Ky’s VCUG and were able to removed the screw through her stoma. No cutting needed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sounds like the bounty hunt worked! I will have to send them something neat to say thanks… I hugged the poor doc… I think his name was Josh. I was just in shock that here is my little hand is the screw! The dreaded cursed screw!!!!!!!!! What a relief! I watched in disbelief as they took it out! I wasn’t sure they could actually get it but they did! YAY!!!!!

THANK YOU Dr. Kriss, Melissa, and Josh!!!!!!!!!!

Now the not so good:
Unfortunately I was right. I knew there was something wrong. Its just one of those things. Today Kyleigh added a new diagnosis to her list. We now know for certain that she has a neurogenic bladder. This means that her bladder is not receiving signals from her brain which tells it how to contract to empty. So it stays full. Anytime she “pees” she is not really peeing… we are just seeing the overflow. She really doesn’t have control over it.

Add to that the fact that she is refluxing into her left kidney. The valves between your kidneys and bladder should be one way valves. Once they close and allow urine into the bladder they should not open the other way. When Ky’s bladder gets so full it starts backing up into her kidney.

So we will learn how to cath her. We have to do this if we want to save her kidneys and bladder. We do not have a choice.

This probably also means that her spinal cord / neurological issues are further advanced than we thought and are going to need to be taken care of ASAP as it is complicating the bladder issues.

And as always there was our amazing Dr. Joe. Coming all the way from the OR to see the screw with his own eyes! I thought I might have to fight him for it! LOL He’s so funny. Amazing that one person can make such a difference in how you perceive things. Today could be nearly devastating, but you know what… We can do this. Just like we can do everything else … we can do this. Joe is here helping to guide us along the way. Making us laugh at seemingly un-laughable times. As parents we doubt ourselves, our abilities, our judgments. Joe is always there to tell us that he is confident we will do what is right for Kyleigh. We just feel at peace with him. Joe has no idea what it means to us to know that he is there watching over Kyleigh (and us- mostly us sometimes….). To feel like no question is stupid and to know that he has seen our process. It will be okay Troy says. Joe will help us. Yes I know we will be fine through all this and thank god we have someone we trust so much, and have miles of respect for, to care for our daughter.

I am entitled to TODAY – the next 24 hours to feel sorry for myself and my baby girl. There is good in everything and I am logging off for today. I don’t ever want this blog to turn into a “downer”… Tomorrow is a new day and I will hit the ground running on everything we need to do for this new set of problems. I will be back to my old self again. Today is just hard and we need time to grieve. Its only healthy. Troy keeps saying “It will be okay”. I think he is trying to talk himself into it. It will be okay. WE will be okay. Kyleigh is already okay.

I think we will leave a night early heading to IL. We just need to get out of here!

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