Wednesday, March 30, 2011

Possible Predicament Looms in the Future

I'm going to backtrack a story into this blog post, because something really cool happened a couple weeks ago, and something really cool and similar happened today. Vincent had his first dental appointment. I was fussed at by the dentist for giving him too much Juicy Juice. My son is very demanding with his juice and refuses to drink water. It's quite a battle. We've started putting MiO into his water and it's helping a little bit. He still doesn't have any cavities, but most likely will if he keeps up his *cringes* almost 30 oz. of daily juice habit. Well presently, since the dental appointment, he gets usually only one cup, possibly two now a day. With Marlena's early intervention came the optional support group "Family Connections." Being the social butterfly that I am, I accepted and I'm so glad that I did. They partner you with another parent, who usually has a child with the same condition, and you connect via phone/e-mail. My family partner is such a strong woman and I'm so glad I've been able to talk with her and hear her story. Talking to her really helps to reassure me that no matter what happens, it will all be alright in the end. As I was talking to the dental assistant, I casually asked when Marlena should be seen for her first appointment. I mentioned that she had hydrocephalus. Guess what? My family partner heard me say "the word" and recognized us. It turns out she is a dental assistant there! It was so great to meet her.What a small world.

Today was really rainy. I took Marlena to see the neuro's office today to discuss with the nurse practitioner her take on the last CT scan. She wasn't able to compare this scan to her MRI, which was done back in December, because she explained that she doesn't have the capability to do so. Only her neurosurgeon can do that. I will have to wait eight long weeks before I know just what exactly is going on in that pretty little head of my daughter.

What's clear, is that her left ventricle is still pretty enlarged. The nurse practitioner thinks there is a possibility that it may not be communicating properly, or well enough, with the shunt. There could possibly be a membrane blocking it.Our discussion about the possibility of surgery was short, but scary. When Marlena first received her programmable shunt, the setting was at 100. After monitoring her head circumference and observing no plateau, it was decided that it be turned down to 90. Today, it was decided that from a clinical standpoint, that the shunt pressure should be lowered to 80. So now, we're flowing faster than ever before. We did the routine x-ray to make sure the setting was good. I hope changing the pressure gives that left ventricle the jump start that it needs to start cooperating. Some options that were discussed today were that a catheter be inserted into the left ventricle. It's basically like another "straw" that would be hooked up to her shunt. The other option she mentioned was poking holes in the ventricle. (I'm assuming this is something like an ETV.)

On the CT report, I noticed a word that I hadn't been informed of and didn't understand. "Encephalomalacia." This is the softening of the cerebral cortex, and was basically described to me as "brain damage." The way this was worded into the report was "Probable encephalomalacia left super lobe." The nurse practitioner is always very hopeful and told me that it may not stay this way. It's all confusing to me.

I am usually pretty observant where ever I go. When I'm sitting in a waiting room, I look around and check everyone out. I just like to know who's around me. I had to wait almost 40 minutes before Marley and I were called back. Our appointment lasted most likely around 30 minutes. When I came back out, a couple with a baby who was already waiting when I checked in, were still there!! Waiting. On my way out, I asked, "You still haven't been called back!?" "Nope," they replied, and then it hit me. I recognized this beautiful family!! It was so nice to meet them and their beautiful miracle. It was brief, but sweet, as they were called back right after the revelation that I recognized them from Facebook. It's funny that we later found out that our next appointment is also on the same day, which is so strange, considering they have different neurosurgeons. And again, what a small world.

We have a neurology appointment for the end of the month. I'm kind of scared, considering nothing else has happened. I don't want to learn something that I don't want to know yet, if that makes any sense. 

My mother just had shoulder surgery done on Tuesday and she's really sick from the medicine/general anesthesia. I was good to her and brought ginger ale, jello, and picked up her phenergan for the nausea. I hope you feel better soon, Mom. I love you.


  1. Which family did you run into in the waiting room? Anybody I know?

  2. I don't think you do know them! They just had a baby boy who was diagnosed with an encephalocele, but he hasn't required a shunt. The surgery to close his encephalocele went well.