There are many readers who may not know all of Jayson's history. Some may have forgotten exactly what Chiari is and what J's decompression surgery did. Feel free to visit my blog posts: Reliving My Worst Nightmare, Bad News, The Waiting Game, We Are Blessed, Post-Op Euphoria, Second Time's the Charm Or, here is a quick summary:
Jayson was born with a condition called Chiari malformation that happens when the cerebellum and/or brain stem is compressed and pushed down into the spinal column or technically past the foramen magnum. It requires surgery when the symptoms are life threatening and/or greatly restricting the flow of spinal fluid. When the flow is restricted, it is common for Chiari kids to get hydrocephalus. The spinal fluid can also collect in the spine and make what is called a syrinx.
In December of 2013 Jayson stopped breathing for about 2 minutes and became unconscious and unresponsive which resulted in getting his second MRI and diagnosis of Chiari. He had practically NO flow of spinal fluid but did not have hydrocephalus or a syrinx.
In January of 2013, at 12 months of age, Jayse had a Chiari decompression surgery. During this surgery the neurosurgeon removed part of his cerebellar tonsils (part of his brain), part of his skull and part of his top vertebrae to make room for his brain and cerebellum. Doing this decompressed his brain. Everything went well, and Jayson made HUGE gains and strides almost immediately after surgery. The brain stem controls breathing, swallowing, and many other critical functions of the body so his apnea, aspiration, muscle tone, eye movements, temperature regulation, and seizures all improved after this surgery.
Jayson is now starting to show the signs of intercranial pressure again. It is likely that his Chiari is coming back, that his brain stem is getting compressed again. It is also possible that he could have hydrocephalus causing his symptoms. So those are the things we are looking for in the MRI--Chiari and hydrocephalus. We are also doing an MRI of the spine looking for a syrinx and/or tethered cord syndrome. If the MRI concludes that Jayson's Chiari is back and his brain stem is compressed and restricting the flow of spinal fluid, we will be looking at having a second Chiari decompression surgery in the very near future. If he has hydrocephalus, then we will be looking at a shunt in his brain to relieve the pressure and drain the fluid. If he has a syrinx or tethered cord syndrome, he may be having spine surgery.
If the MRI is clear, I will celebrate! But I won't feel okay. I can find many reasons why Jayson could be experiencing his many symptoms. His sleep patterns are crazy because he's a 2 year old toddler with sensory processing disorder. He's vomiting because he's been constipated. His seizures are back because he gained weight and needed an increase in meds. There could be another reason for everything BUT his head pain. Why is he rubbing his lower head and upper neck and fussing in pain off and on all day long? It could be his C1 vertebrae. He was born with an unstable and incomplete top vertebrae (C1) and the Chiari decompression surgery removed even more parts of his C1 making it even more unstable. It is possible that this is what is causing his pain and discomfort. If the MRI is clear, I will likely request x-rays and possibly a CT scan of his C1 to see if it needs to be stabilized. If so, J will have to wear a neck collar until he's old enough for a spinal fusion surgery.
So there's the history. There's the facts. And this is what we are looking at. Many may think that a possible repeat brain surgery is why I'm so upset and anxious right now? No, we've been there and done that. I saw how surprisingly well recovery went (after his second wound correction surgery) and how quickly he improved. Others may think I'm anxious about being in Primary's again after such a long reprieve. No, that's not it either. Sadly, I walked through those doors today and I felt at home. I'm comfortable there. The truth is that I'm terrified of what might happen BEFORE surgery. Jayson has stopped breathing on us three different times-- once in March of 2012, again in August of 2012, and lastly in December of 2012. He required intervention and even CPR to begin breathing and become conscious again. Those are the most darkest, most horrifying moments of my life that I never wish to relive. Since his decompression surgery, Jayson has not had any life threatening episodes. Until we know whether or not Jayson's Chiari is back and compressing his brain, we are on high alert. We will have to watch him very closely, keep him on a monitor at any moment he is asleep, and not take any chances. I don't like that feeling. I don't like living in fear. I hate feeling like I could lose my boy any time he falls asleep. It's awful. It's all consuming. I really hope and pray we can get answers soon, and that my son can get relief from his pain he is currently feeling.
I truly am humbled and overwhelmed by the amount of love, support and prayers being poured upon our family. I don't feel alone. You all have reassured me that I'm not alone. Please continue to pray and hope with our family that we get the answers we need quickly, that Jayson can get relief from his pain, and that Mike and I will be able to do everything possible to protect Jayson and keep him alive and well in the meantime. Thank you and much love and gratitude to you all.
