April 26, 2022 "Sedated 7 Layer MRI"

This day began very early. Rayden could not eat or drink anything due to being sedated for the 7 layer MRI. After shunt series x-rays we went to the surgical floor to check in. I am not sure who was more excited to see the other, Rayden or Mr. Lamont. He was the person that escorted Rayden from his room to surgery/wound vac changes during our 65 day hospital stay in 2021. They developed a special bond. Rayden even colored him a picture and signed his name on it while waiting to be sedated. If you know Rayden, you know that's a special gift because he doesn't enjoy coloring. Mr. Lamont was very excited to receive it as well. It really calmed Rayden's nerves and made him feel at home when so many nurses and child life specialists came to see how their 'little rock star' was doing. A new anesthesiologist soon arrived to talk to us about sedation. He said he was excited to meet Rayden because he couldn't even get down the hall without people talking about how amazing this warrior is. This made Rayden feel special as well. He proceeded to talk to him like an adult. He knew Rayden hates the mask, and fought off 5 nurses one time in the OR. He also knew how extremely difficult it was to start an IV or draw blood from him. He explained that there were only two ways to sedate him, mask or IV, and gave Rayden the choice. He talked about the bad smell and taste of the gas and promised him that if he took really deep breathes then it wouldn't last long. He even said Mom could hold the mask so he wouldn't be so scared. We could see Rayden's wheels turning as he was weighing his options and making a decision. He agreed to try the mask without fighting. After arriving in the sedation room near the MRI, the anesthesiologist did exactly as he promised. He talked so calmly to Rayden reminding him to take super long breaths through his mouth and gave me the mask to hold over his nose and mouth. Rayden drifted off soon while holding my hand. I gave him one last kiss before Michael and I walked to the waiting area. 

Two days later Dr. Lewis emailed me some information. Since Rayden has only had rapid sequence MRIs since birth it is hard to interpret how much has changed. They can't really explain his recent seizures. The MRI revealed Rayden has so much going on his little head. 

1-Massive hydrocephalus treated with VP shunt in the right lateral ventricle. The ventricles appear markedly dysmorphic with an enlarged CSF space between the parietal and occipital lobes possibly reflecting cystic encepahlomalacia (brain damage). Epilepsy is common in people with hydrocephalus.  

2- Missing septum pellucidum, which may cause learning difficulties, behavioral changes, seizures and changes in vision. 

3- Missing Corpus callosum, a bundle of nerves connecting the left and right sides of the brain. Symptoms range from minor intelligence issues to developmental delays and seizures. 

4- Stable Chiari II malformation (need for shunt). Seizures are reported in patients with and without symptoms. 

5- Dolichocephalic (long and narrow) head shape

6- Polymicrogyria (too many small folds) throughout the cerebrum bilaterally (both sides) which tends to cause more severe neurological problems. Symptoms can include recurrent seizures (epilepsy), delayed development, crossed eyes, problems with speech and swallowing, and muscle weakness or paralysis.  

7- The hippocampus on both sides of his brain are small and abnormal appearing. The hippocampus plays a vital role in regulating learning, memory encoding, memory consolidation, and spatial navigation. This part of the brain can frequently cause seizures as well. 

8-Bilateral parietal lobe periventricular white matter abnormality and cystic change, which can damage important pathways within the brain and can cause problems with memory, balance, and walking.  

She wants to do a longer, 24 hour EEG to hopefully capture any abnormal discharges and see where they may be coming from. She will then review it and the recent MRI with one of their pediatric epileptologists to see if they can pinpoint the origin of the seizures. It may take up to a week for the study to be read and then we will meet again. After seeing the MRI report, I honestly don't know how they are ever going to pinpoint the origin. There are at least 6 out of 8 abnormalities in his brain that can cause seizures!