8th MRI and update from Neurosurgery

Today was the Henley's 8th time under anesthesia for an MRI. Man, that is a lot for a 4 year old! As I am learning, it's not any easier today than it was the first time. We have heard all of the protocols and given her name and birth date to about a thousand different medical personnel at this point. We have even reached a point of familiarity with the nurses. Every time, we put on a brave face for Henley and tell her that she is going to be just fine, while we sit in the waiting room in nervous anticipation. 

This time in particular, I got up to go to the restroom and when I walked through the door of the bathroom, I realized I could hear Henley's MRI in progress through a shared wall. It killed me to know I was that close to my baby and she was in there all by herself. I'll admit I stayed an awfully long time in the bathroom listening to the sound of the MRI and praying for God to send an angel to be with her in that room. I just needed to know that she was not alone. After leaving the restroom, it became hard not to want to stand by the wall and listen to every beep and knock so that I would be the first to know when it was all over. I checked back about every 30 minutes for 2-1/2 hours. In between walking back and forth to that shared wall in the bathroom, I did my best to meditate on this verse that a friend put on the back of a shirt she had made for Henley. It has been one of my favorites through all of this: Psalm 112:7-8 "They do not fear bad news; they confidently trust the LORD to care for them. They are confident and fearless and can face their foes triumphantly."

When they do her MRI's, they are doing 4 of them at a time along with a fluid flow study to track the spinal fluid and how it is moving around the brain and brain stem. Once it was all over, we got to meet her back in recovery. We were running late to our appointment with the surgeon so as soon as she was able to sit up and eat a popsicle, the nurses put her in a wagon and we all went upstairs to the office visit.  
When we got back, they took her blood pressure. It was obvious that she was still really lethargic. Her blood pressure was 84/48. They said it wasn't super concerning, but that they would be watching her and would check it again before we left.  
We met with Dr. R and I felt like we had the same conversation as last time. We were concerned that she might have a tethered spinal cord due to the back and leg pain she is constantly complaining of. THANKFULLY, she does not have a tethered cord! A bonus to that info was that if she doesn't have one now, it's highly likely she will never have one. So, no need to check for that again. 

Another praise is that she still is syrinx free! In the Chiari world, that is a pretty huge deal. If she had or ever does develop a syrinx, which there is a high likely hood for, that immediately guarantees another brain surgery. What is a syrinx? Basically it is when you have a collection of spinal fluid in your spinal column. It has the capability of destroying the spinal column, which as you can imagine can cause a lot of terrible outcomes. So we don't want that...EVER. However, when you have a Chiari and everything is so compacted at the base of the foramen magnum, it is very difficult for your spinal fluid to flow properly. Consequently, a lot of times the fluid will choose the path of least resistance and end up pooling in a cavity inside the spinal column.  
So, as of this moment, Henley does not have a syrinx and we will continue to praise God for that.  

Dr. R said that her brain is still very tight/compacted down at the foramen magnum. There is a minimal amount of spinal fluid getting through and this is definitely not a good thing. Basically, the cerebellum is pushing against the brain stem and there is this teeny tiny sliver that the CSF is traveling through. As of now Henley is not having the symptoms to merit another brain surgery (i.e. throwing up, choking, gagging, and difficulty swallowing). We are mostly dealing with migraines, back pain and leg pain at the moment and that may be due to the Ehlers-Danlos Syndrome. However, it feels like we are just like a 1/32" away from having the same symptoms from two years ago. Basically, if the brain grows or moves and puts any more pressure on the brain stem, or cuts off that sliver of fluid flowing, we might likely have a big problem on our hands.

So why wouldn't we do surgery now to fix that problem? Well, because there is a chance that over time her brain might just decide to fix itself. With a developing child, it's kind of like watching a moving target. We really don't know how it's going to change over time. It would be amazing for her brain to decide to pull back up into her skull and open up all of that extra space. (We would love for you to pray for that. That would be a miracle that only God could do.)
   
SO during the appointment while Dr. Roberts was talking, Henley started throwing up. Because of the anesthesia, not because of her brain. After the appointment (about 45 min later) we went back to check her blood pressure and it was still 84/48. She was still too weak to walk, so Adam carried her to the car. She got sick one more time in the car on our way home. Luckily we are trained professionals and keep barf bags in the car. We made it home and after a little food, she perked right up and has been back to her normal self since then. 

Please keep us in your prayers. Next Wednesday we will be looking at her heart with an EKG and an Echocardiogram to, Lord willing, rule out any congenital heart defects.

Thanks for sticking it out to read my uber long updates. It's a little bit of therapy for me along with the info it carries. For those of you who love the pictures, I will post some MRI images next.