Monday, January 7, 2013

MRI results


So we just got home from Braydens 1st birthday pictures and dinner with granma and granpa.  The photographer did great, and Brayden smiled big with very little fussing. They turned out great, and we pick them up on Wednesday.......

On Friday we received Braydens MRI results. I was nervous to get them, as I know our physician pretty well and there was an urgency/concern in his voice when we spoke on the phone the day before. I was prepared for what I thought was the worst case scenario. I was prepared that he might tell me he had significant brain damage, that he may never be able to talk, or walk without help. None of those things really matter to me, I mean he is still my little man no matter what, but I was hoping for better for him.

When we went to the clinic to see him for our family meeting, he didn't say any of those things. He told us that Brayden had mild PVL (periventricular leukomalacia). He also said it would affect his motor skills, but that it could probably be compensated by physical therapy. He said that Brayden would have to work harder, but that he could get it figured out with the right therapy.

This next part I was extremely unprepared for. We were shown images of the MRI and he was explaining to us that the right thalamus was enlarged. I was having a hard time following as he was trying to be delicate with me. Then, he finally clarified saying there was a mass on his right thalamus. What?! A mass?! That is a medical term that I am familiar with. I immediately began asking questions about what it was and what we were going to do. He explained many different "things" it could be, and how those things happen. Some of those sounded significantly worse than others. He then informed us that they didn't know what it was for sure, and until they could identify what it was there was no treatment plan. Apparently we will identify it by further scans called MRI, MRA, and MRV. At this point they are scheduled for Friday the 18th. I of course want them sooner, what mother wouldn't?  Unfortunately , radiology said Brayden is not a priority, I mean that they are very busy, so our physician is currently pushing to get him an earlier appointment. Hopefully he will be successful, we should know tomorrow. These scans will be under general anesthesia again, and baby boy will be awarded his 4th breathing tube in a little over a year.

I just can't believe it. I have been holding my breath for an entire year waiting on these results. Now I find some answers, but now I have even more questions. The nurse in me knows this is serious, I mean its a mass on the top of his brain stem. This might just be one of those times that I wish I wasn't a nurse. Sometimes I know too much for my own good, or at least it seems that way. I am sure my family would like to disagree and they wish they knew more. The grass is always greener on the other side right?

My family has been great at staying positive and supporting us in any way they can. After all, they are his granparents/aunt/uncle. I know they are just as worried, but they do a better job of staying positive than me. Lizzy keeps giving Brayden kisses, and they continue off in their happy childhood world. What I would give to be as innocent as the two of them right now.

We hope for good news and plenty of treatment options as we get these scans and meet with our neurosurgeon. Brayden obviously doesn't know, and he is still the same happy little man he has always been. Its hard to believe when you look at him and he has this mass. He doesn't look or act sick at all. So now we take another deep breath and move forward. Here's to hoping I won't have to hold this breath for an entire year.

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