Saturday, April 2, 2011

Better

Yesterday was a bit better. I was able to speak to the geneticist and that made me feel reassured. She did say that we should be encouraged by the fact that she sees a lot of babies who have one multicystic kidney and are born perfectly healthy. I am going to focus on that. She also said that what can happen is that one of the kidneys grows larger to compensate for the non-functioning one and that it may even mean Aiden wouldn't even have to have surgery to have the non-functioning (if it is, in fact not functioning - we won't know until he's born) kidney removed.

She also said that the panel of doctors and geneticists who originally met (I think there's 7-8 of them) to determine Cole's cause of death (multicystic dysplastic kidney disease) and my diagnosis (NOT Polycystic kidney disease) will reconvene given the new information to determine whether or not they think they need to change the diagnosis. That made me feel reassured.

She also said that it still does not look like polycystic kidney disease because only one kidney is infected (it would be more likely if both kidneys were infected). So she didn't feel comfortable jumping to the conclusion of changing the label until the doctor's reconvened. I found this information that gave me reassurance:

What is Multicystic Kidney Dysplasia?
Multicystic kidney dysplasia is a condition characterized by the formation of multiple cysts of varying sizes on the kidney. Multicystic kidney dysplasia is present at birth. The cysts are usually visible on prenatal ultrasounds. Multicystic kidney dysplasia usually involves only one kidney.  In most cases this condition isn't cause for alarm, since one properly functioning kidney is sufficient to provide the normal amount of amniotic fluid.
She also went ahead and ordered Connor's kidney ultrasound and my monthly radiology appointments (to check growth).

I left the conversation feeling encouraged. And now I need to find a way to bottle this up and stay focused on this.

2 comments:

courtney said... Best Blogger Tips[Reply to comment]Best Blogger Templates

your family and friend will help you stay focused on all that positive information. It is so hard for us mommy's to not jump to the worst case scenario, or to allow of imaginations to run wild with all the what if's, especially when you are facing a child who might have, or does have special needs. No matter what the eventual diagnosis, treatment, you all will be given all the support you need. I am glad you are feeling a bit better...keep it up! =)

LittleDreamer said... Best Blogger Tips[Reply to comment]Best Blogger Templates

I'm glad I checked in today. It's a dose of better news for all. I second Courtney's comment about support...we're here for you no matter what. Don't give up hope. We're going to meet two beautiful and HEALTHY twinsies!

(p.s. if you figure out how to bottle up the good news let me know. I might copy the technique.)

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