Tuesday, April 21, 2009

More Tests Ahead.

Well, today was a VERY long, tiring day. Up at 6ish and not home til 5ish. UGH! Sumana had her CT scan and saw Dr. Silberstein (the neurosurgeon). However, now the future is much more uncertain. Dr. Silberstein couldn't see what he needed to see on the CT scan, so we're going to get an MRI as soon as they can schedule it. From what he can see, her spinal cord is split, but I don't think he's sure of the cause. If I understand correctly, there is a piece of bone growing in between the cord. That could be the cause of the split, or the bone could have grown up AFTER the split. If the MRI is still inconclusive, he would have to do an exploratory surgery to get an answer.

Also, since we don't have any pictures of her back from India, there's a lot of guesswork regarding how her spine opening was closed up and what type of spina bifida she actually has. (She has been labeled with at least 2 different types, I won't try to spell them here . . . for your sake and mine!) I think the bottom line is, she needs to have a free and clear spinal cord before Dr. Sanders attempts to straighten her back. (I mentioned in an earlier post that her cord might also be tethered; hung up on itself). As we were leaving, Dr. Silberstein mentioned that he might be able to do his part of the surgery first, with Dr. Sanders following him. This would save Sumana from being opened up more than once.

On a much lighter note, we got to meet Giana and her mom today in the PICU at Strong. (I'm learning all kinds of new words! Pediatric Intensive Care Unit). Here's a picture:
She's such a happy little baby. She's had so many challenges in her 9 months, but she has the best mom! Dana showed us all around the PICU, a family center/outdoor play deck and the Ronald McDonald House. She shared some of their story and what it's like to live in a hospital setting longterm. (She certainly has made the most of it; I wouldn't want to do it!) Dana is hoping that Giana will get over her infection soon and be able to get her VEPTR this summer. Sumana and I feel much better after seeing the PICU and its machines and hearing about the great staff there. She'll be in good hands.


  1. Hey Cheryl and Sumana,

    Sorry to hear the CT scan was inconclusive:( But I know that the doctors will find what they need! I spoke to my nurse friend who works at Strong and she said you should be able to talk to the surgeon to get a tour around. Although it seems as though you got a great tour today! See you on Friday!

  2. wish I ws there to give you a hug! I know the waiting is tough and tiring. God will take care of it all... 1/2 around the world he found you for Sumana. He has a plan.
    LOve you