I am scared to type that Parker has not had a pain episode since October 1st. I’m afraid if I type those words she will have another one.
We had an appointment with our Neurosurgeon last Tuesday. I expected by that time she would have had several episodes because that is what happened last Spring. But, that wasn’t the case. So, the plan isn’t really a plan. We are scheduled for a MRI on 12/18. He wants to see how her ventricles have reacted to the new valve that was placed in May. If she becomes symptomatic, we will revisit the CVR surgery or possibly another revision. I almost feel like we are on a hamster wheel.
So, the plan is a MRI. It doesn’t really feel like a plan, but I’m okay with that.
When I was pregnant with Parker, we had the most awesome High Risk OB, Dr. Mirabile. He is unbelievably frank and at one time told us Parker would resemble an alien (very little body and very big head) at birth. Some might be offended, but we were fine with his honesty. He wasn’t far off. I’ve said tongue in cheek that Parker’s head shape went from alien to conehead and it now has a Klingon ridge.
The reason it was so large at birth was because of all of the cerebral spinal fluid accumulation in her head. It had no where to go because of the blockage between her 3rd & 4th ventricles. Because of this, her brain was severely compressed. It was a very fine sliver. I can say those words, but until you see the pictures of the dark grey fluid and lighter grey brain, you don’t truly grasp how little brain “fluff” there really wasn’t at birth.
The day after Parker was born she got a shunt that allowed the fluid to drain into her abdomen. Over time, most of the brain came back. However, there was a large fluid filled cystic structure (Schizencephaly) detected on scans at 6 months that basically took up space where her brain had atrophied. I saw the huge interhemispheric cystic structure, and it scared me. I googled again as one does when they get diagnostics. I prayed over time, the fluffing would continue and the cyst would dissipate.
It isn’t uncommon to have these large fluid spaces. I was pleased she had brain matter. And, I have always been happy with any accomplishment.
Time passed and earlier this year Parker started having pain episodes. She hadn’t had imaging in quite some time. So, once the pain became horrendous, we went to the ER. To my shock, the cystic structure was exactly the same as her 6 month mri.
We hypothesize Parker is having intermittent over-production malfunction of her shunt. Basically, your head has fluid, skull & brain. During her pain episodes, the shunt works too well and the fluid is over-draining and the brain cavity becomes dry, if you will. This omits one main component of the trifecta. Hence, Parker will scream, cry, plead for comfort, etc. As a parent, I pray no one will ever have to go through this.
So, over time Parkers’ skull plates fused over-lapping. Her brain grew at a rate faster than her skull. The remedy is cranial vault reconstruction. This would be by far the most serious, extensive surgery she would probably ever endure. I’m praying the skull will soon compensate and grow.
I feel defeated, deflated, disappointed, sad, upset, etc.
In May, Parker had a shunt revision (brain surgery). It seems like it took a long time to get there. I didn’t talk a lot about how we got to that point because I try to be positive. It was a rough road. I know we are very blessed when it comes to Parker’s health. I am in contact with hundreds of families and many of them struggle with the health of their children with Hydro. It isn’t uncommon for a child to have many shunt surgeries. Parker has only had two in her 4 years. Our Godson had 8 brain surgeries his first year of life. This isn’t unusual. 50% of shunts fail. It is a sad fact.
Last Fall, we thought Parker was having seizures. It turns out she was having intermittent over-drainage of her shunt. The malfunction started every 6 weeks then over time happened every couple of days. The pain is excruciating.
When Parker had her revision in May, our Neurosurgeon suspected her skull was too small for her brain and that was ultimately the cause of her episodes. He surmised the revision was only a band-aid and ultimately we would need to do Cranial Vault Reconstruction to make her skull bigger. It is a 7-8 hour procedure, and I’m totally scared.
Tonight, Parker had an episode. Should these persist, CVR is in our path. God bless my little pumpkin.