10/28/2026
UPDATE!
Alright, buckle up because it has been a jumbled mess of many things the last couple of weeks since Jemma had the status seizure and so much has happened.
Once we’d settled back home, I sent a message to her neurosurgeon and neurologist through the portal. In short and probably the most brash I’ve ever been via text, I said that what happened at her admission was one of the worst experiences we’ve ever had at CMH, and how disappointed I was with the the way things went. Not one provider wanted to view even one of the many videos I had of her ataxic events, or the new prolonged seizure and how that presented differently than past seizures. I told neurosurgery that if they were unwilling to pursue the possibility of Slit Ventricle Syndrome and would not run any tests to at least investigate it and rule it out, instead of trying to gaslight me into believing it’s too “ rare”, that we would go to CO and try there, because I won’t waste my time, as well as theirs trying to force their hand.
Then, to my surprise, her primary neurosurgeon hopped on the chat this was on with an NP and responded. And gave me a run for my money in the monologue/novel writing department. He’s never spoken or written that many words to me ever, and he’s been her surgeon since 2022. He said Jemma is absolutely at risk for Slit Ventricle Syndrome if she doesn’t already have it. The condition IS rare in general, but not for Jemma. Her medical history actually matches the exact criteria that would lead us to suspect this condition. Structural brain injury/loss, VP shunt placed in infancy, multiple revisions and a siphoning valve placed at her last revision almost 2 years ago and since then has consistently shown on MRI to have low pressure and slivers for ventricles. She cannot verbally tell me she has headaches since she’s minimally speaking, (ER neuro resident claimed the condition was impossible because she didn’t complain of headaches, the look he gave when I said ‘how do you expect her to tell me?! Verbally? She can’t. She communicates with few words and mostly physical gestures.” Tell me you didn’t read her chart without telling me. 🤪) Behavior is communication, and we know Jemma.
So, at first he scheduled a lumbar puncture to check for shunt malfunction because if she has SVS then the brain will have sort of shrunk and the skull with it, low pressures lead to a sort of “dry brain” so in the event of a shunt obstruction, the brain could not expand to allow the increase in fluid and would not show obvious malfunction by enlargement of ventricles on MRI. So the only way to check would be a lumbar puncture. Then later that same day, he sent another message to say that instead of that, after looking at her images he would recommend that instead of doing more procedures only to inevitably end up with surgery at the end of it anyway, he would like to just electively do a shunt valve replacement next month November 18, with a stealth CT and Pre Op appointments on November 17. Unless she would worsen and in that case we should bring her back to the er then.
It sounds simple when I write this, but the process to get to this sensical conclusion took about 5 days, many messages and more than 10 phone calls back and forth between the surgery scheduling department, nursing, and neurosurgery, and was not at all simple. They changed the CT appointment 3 times to coordinate with anesthesia, almost delayed surgery into next year and required so much advocating and conversation from me. If I just obeyed the order at every call, I wonder where she’d be. Every call is a different person missing a different part of the story and once I explain that this cannot wait any longer, and I explain the situation for the umpteenth time to yet another person for them to say “sounds like she might need to come to the ED” I just about lose it saying “we’ve been there, done that! Why do you think we’re having this conversation?!” This is the part of medical motherhood people never see, the constant work of coordinating, advocating, calling, and advocating again and repeat.
Since the admission, Jemma has had another seizure that has required nasal rescue medication, and thankfully this time, it worked immediately. I don’t understand what the difference was between last time and now and why it worked so well now and not then. In my layperson opinion, (if I can still call it that at this point) her seizures seem to be starting as a focal seizure, then as it continues after 2-3 minutes and the VNS magnet is unable to interrupt it, the seizure intensifies and breathing stops, and she starts shaking more, the seizure is moving into what I suspect is a more generalized seizure involving her whole brain and not just one area, and looking more like the traditional tonic-clonic or Grand Mal seizure. This is not confirmed by EEG but I’m starting to believe we’re heading in that direction if we’re not there already and nothing changes. So, we had a Keto Clinic screening appointment last week, and just fished a 3 day food log and are seriously pursuing that avenue. Medical ketogenic diet for epilepsy is VERY different than the weight-loss “community Keto” you might know. It is a very strict diet and treatment for a 4 year old that loves goldfish and fruit snacks, but there’s not much left to try. There’s good research and evidence that Medical Keto is effective for Lennox-Gestaut, and Epileptic Spasms, which Jemma has also had a relapse of in the last week. Spasms are my personal enemy, they look so subtle but are evidence of baseline brain disorganization, dysfunction, regression in skills and inability to learn, they were the beginning of Jemma’s epilepsy journey during cancer treatment, and the treatment for them is horrible, when she has a breakthrough of spasms, it’s incredibly discouraging for us. Grand mal seizures are typically easier to treat and “cure” than spasms are. Please keep praying that she can be free of this somehow.
Jemma also has her Behavioral and Developmental clinic evaluation on November 13th, it’s a 4 hour appointment and we’re anxious to see if she truly is on the autism spectrum or if her behaviors and sensory needs are due to a sensory processing difference, or something else entirely. Whatever it is, we just want to better understand her and what she needs and have more resources from the people that know how to help her the most. During this Jemma will have her wheelchair adjusted and a growth kit put on so it will be more comfortable for her.
We’ve also applied for a safety bed for Jemma through insurance because she is outgrowing her crib, and she has had two instances where she has wandered. Once in KC, she was able to unlock a deadbolt and walk onto the street that was connected to an interstate highway, I was in the bathroom and nobody in the house realized. By what I know is a miracle from God, a woman was on a walk and saw Jemma and stopped her from walking onto the highway. I was absolutely terrified and a sobbing, panicking mess. Jemma on the other hand was just trying to play with the stop sign, she loves to hold and walk around any metal pole and sing “pang pang!”, I don’t know why, but she has a fascination with traffic signs and flagpoles. So she was totally unaware of the risk to her life and just thought she would have herself a fun little solo adventure and was just happy as a clam about it, whilst her mother is having a heart attack. 🤪🙈😭 Another time while on the way back from her last hospital admission actually, we didn’t have the portable playpen with us because it had been an emergency, so she slept on the hotel bed with a safety border of pillows around the bed and floor, but at about 5 am I jolt awake at the sound of the hotel door hitting the metal safety flap as Jemma is attempting to open the door and let herself out. We’d only got into the hotel at 1 am and planned to leave by 7 am, and she typically sleeps through the night. She had other plans that night however, not sure what they were but whatever it was she wasn’t about to go anywhere without me. Terrifying. So, we applied for a safety bed. But alas, despite these instances being an obvious risk to her safety and possibly her LIFE, insurance does NOT consider safety a medical necessity and will deny claims for safety beds more than 50% of time, according to the Rehab Med doctor that sent the prescription for it. I guess insurance believes medical parents are robots that don’t need to sleep or use the restroom, but should stand guard to prevent their children from escaping 24/7. We’ve submitted all the documentation we could to prove she needs this, and now all we do is wait and see and hope, that the powers that be inside some insurance cubicle will see some sense and have an ounce of compassion to approve it. From the amount of prior authorizations and appeals we’ve had to do just in the past 3 months to keep Jemma’s necessary epilepsy medications, I don’t have high expectations. Medically, Jemma is a very expensive patient, the cost of her medications alone totaling more than 20k per month. 🤪 I imagine they hate to see us coming again.
Life with Jemma is busy and she’s always got something going on, so I appreciate everyone that has checked in to ask about her. It means so much to us! 💛
