Today was an important "next step" for addressing Mei Li's medical needs. We met with Dr. Blount (a wonderful and highly respected neurosurgeon) at Children's South. It was just a consult, and he spent a great deal of time talking with me about Mei Li's meningocele, what it "is", how it affects her (now and down the road), and how he proposes moving forward. It was an educational session. And, from today's visit we know that Mei Li will next need 2 tests to establish baselines. . . an MRI (which we already knew about) and one that will test the functionality of her bladder. I forget the name of that test. Once we have these tests, Dr. Blount will move forward with surgery. . . most likely after the new year.
What was explained in today's visit is that a meningocele is in the spina bifida family, although it is more minor. It is a fatty tumor that affects the spinal neural tube. The tumor, itself, is not harmful in any way to Mei Li. It is "fat" like what we have when we consume too many calories. Although Mei Li's has nothing to do with caloric intake. It is the result of a defect of the closing of the neural tube that happened before birth. And, the body's response was to make this little fat pocket. What is concerning about it is the fibrous tissue that binds the tumor together. He described it working kind of like the plastic mesh that is around a turkey that you buy at the store. This "mesh", however is throughout the fatty tumor and serves to bind the tumor to the spinal chord. As Mei Li grows, slowly but surely, the spinal neural chord moves upward in the torso and the "mesh-like fibers" pull on the spinal chord and very probably will cause "tethering" of the spine. This could cause paralysis and incontinence.
As of now, Mei Li is able to walk and use her legs (although she shows no signs of feeling in her left foot). She is also completely continent and totally potty-trained. She is happy and bright and full of life and vigor. (Just take a look at the most recent videos I took of her playing with her new kitchen set to see this vigor in full-force ;) Dr. Blount tells me he wants to "keep" her that way. If we leave the tumor "as it is", and "hope" for the best, there is a "high" probability that she will experience significant neurological issues in the long-run as her body grows. He told us that "if" she had been left in China and had not received medical treatment, she would have "more than likely" grown into an adult who would have been paralyzed below the waist; and incontinence and loss of bowel control would have been a very probable outcome in her teen and adult years.
However, doing surgery also has its risks--(although only 15% compared to 65% or higher if we leave the meningocele alone). The surgery could also cause neurological issues. That is a risk we will have to take if we hope to keep this tumor from negatively affecting Mei Li down the road as she continues to grow.
Dr. Blount's plan is to carefully disconnect the fatty tumor and unwrap it from the spinal chord. Once it is disconnected, it will not pull on the spinal chord and cause tethering as she grows. His two main objectives for this surgery will be to "disconnect" the tumor from the spinal chord and keep spinal fluid from leaking. Whether he takes the fatty tumor out, leaves it where it is, or removes part of it will be something he decides after he reviews her MRI and knows more about what will be most beneficial for Mei Li. He said that sometimes the fatty tumor actually "helps" keep spinal fluid from leaking. He will have to make that call as he knows more about the tumor and how and where it is attached.
So, up next is an MRI. The nurse will call me to let me know when it is scheduled. And, a test will be set up to measure the functionality of Mei Li's bladder and establish a baseline for her. Both of these tests will require sedation (whether partial or complete). Then, we will meet with Dr. Blount again to discuss his plan for surgery.
Please continue to keep our Mei Li in your prayers. And, if you would, please pray for Dr. Blount and his staff as he makes decisions regarding our sweet girl. We know we are in excellent hands with him. And, though there are risks both ways, it isn't even a thought in our minds to leave that tumor as it is. We already know she has no feeling in her left foot, and she has begun complaining of pain at the site of the tumor. With the high likelihood of severe neurological problems down the road in store for our Mei Li if we do "nothing", we would rather take a smaller risk by choosing to have the surgery.
This one is a biggee. . . and it is never a small matter when you have to do surgery on the spine. But, Geoff and I also know that the same God who suspended the universe in space knows every single cell in Mei Li's body. And, there are no surprises to Him. And, I place Mei Li and the entire medical staff in the palm of His hand as we walk the road to helping our little girl. We greatly appreciate your prayers as well.
Happy Thanksgiving week to you all! Thanks for following along! And, I'll update again as soon as we learn more.
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