Monday, February 28, 2011

What a beautiful day

The sun is shining, it's nearly 40 degrees....gorgeous way to end February.

I am dying that I didn't take a picture of the view from the hospital parking terrace, the view overlooking the entire Salt Lake Valley was so beautiful today!

The visit with our neurosurgeon was great.

It was amazing to see side by side images from Sam's MRI and 6wks and the one from two weeks ago.  I am such a geek and am completely fascinated with this!  There is definitely a noticeable change in the size of his ventricles.  There is more fluid stuck in there.  Left and right (lateral ventricles), along with the third ventricle are enlarged further from 6wks, fourth ventricle looks normal.

The best news of the day is that while there is more fluid and thus more pressure, it is not bad enough that our dr feels the need to get in to surgery quickly!  Yahoo!  He said that he would like to consult with his partners just to make sure that they agree with him, but with this man's experience, especially directly relating to hydrocephalus, I trust his opinion and would be surprised if the other neurosurgeons felt differently.  I suppose it could happen, but I certainly don't expect it to.

Speaking of surgery, he feels like Sam would be a good candidate to have a ventriculostomy (this link also labels ventricles, so that above paragraph might make more sense) instead of a shunt.   We are able to see very clearly that Sam's hydrocephalus is due to an obstruction in the third ventricle.  The term "aquiductal stenosis" has been thrown around in some of Sam's diagnoses, though as I discussed this today with our dr he mentioned that typically in that case there is a membrane at the bottom of the third ventricle that is preventing the flow of fluid out of the brain.  In Sam's case, the obstruction appears to be either due to a small malformation at the base of the ventricle or possibly a tumor (don't freak out yet) in the way there.  While we can clearly see the obstruction, we can't clearly see exactly what it is.   He mentioned that occasionally a small benign tumor will grow there and case the blockage, but that it isn't something that needs to be operated on or needs to be a cause for concern.  Thank goodness, because tumor can be a pretty frightening word.  With the number of malformations that we have seen there in Sam's brain, I'm leaning towards that.  You know, cause all my expertise comes from....uh....being his mom.  Honestly, I don't feel any underlying need to worry about what exactly that blockage is.

Though there are of course risks with a ventriculostomy-as there are with any surgery-they are fewer than those of a shunt.  Less chance of infection, less invasive overall, less recovery because things aren't being implanted clear from the brain down through the body into the abdomen.  We'll talk more about that when the need arises.

So timeline?  Still unsure.  This is a GOOD thing!
Unless we continue to see a marked increase in head size over the next couple of months, we will just hold off, and do another MRI in the summer around the time Sam celebrates his first birthday.  <----That makes me think about celebrating his first birthday!
No surgery plans for now.   Happiness!

We just keep on keepin' on.  Enjoying every day and every smile from this cutie-patootie boy of ours.
Can you believe he'll be seven months on Friday?!  It's amazing that it's been almost a year since this whole journey began in an ultrasound last March......

Thank you again for your prayers-we are so very appreciative!



XLMIC said...

Wow, again. He is just the defier of all odds, that little one is! I find this all super interesting and am glad you put all the medical details and links and stuff. I will keep on keeping you all in my thoughts and prayers.

Laurie said...

Every time I read your posts about Sam I get all tingly and borderline weepy. It's so great to share his journey with you. Glad things are continuing in a positive direction.

Also, I showed my husband "Dot, dot, dot" the other day and he is still laughing about it, All I have to say is "beacause" or "esey" and he's rolling. Thank you. :)

Aaron said...

I am so happy!

Just Beacuase.

Kelsey said...

Wahoo for Sammykins! His first bday will be the biggest bash this family has seen :)

Kerri said...

Hooray for Sam!

Unknown said...


~LL~ said...

I'm glad I sent bigger clothes!!!!! WOOHOOO!!!!! I love hearing about these miracle!