The phone call no parents wishes to ever receive is "Come home now, I'm calling the ambulance." Those were the only words I was able to get from Mason as I bolted out of lunch with girlfriends and raced home. For nearly 10 minutes my mind went all over the place not knowing if it was Mason's heart or an accident with Hadley or Sloane. I immediately called out neighbors Rose and Stephanie and got a hold of Rose to come get "the other kid" not knowing what was going on. God was truly watching over our family that day because Rose was HOME and bolted out her front door to find ambulances and fire trucks swarming our house. The message I got from her was that Sloane was on the floor in the girls bedroom. Shortly after I ran into the house to find Sloane lifeless looking on the floor in their room surrounded by a team of firefighters, paramedics and whoever else was in there. Someone greeted me saying "Your daughter was face down having had a 4 minute seizure and we are taking her to the closest Emergency Room." Mason later describes her lips being blue and fixated eyes. I begged for them to take her to Stanford (where Mason and I both work and is a pediatric hospital) but they responded "We don't have time." That's the second time this year, I've heard that statement and let me tell you it SUCKS. No control. Mason was not allowed in the back of the ambulance, however road up front. From what we heard from that ride, she seized again in the back and the main paramedic told them "Get there as fast as you can." I stood from the street watching them pull away with lights and sirens, yet again, not another good sign.
I arrived at the ED to find my daughter, completely lifeless looking. Pail, eyes glazed over, limp and being poked and tested by a wonderful team of men and women at Good Samaritan Hospital in Los Gatos. I got a quick report on the events that had happened and gave them a quick history on her port wine stain and treatments. Meanwhile while getting through all this history she seized, vomited, foaming at the mouth, eye rolling back, full tonic clonic, fists clinched and difficulty breathing. Sucks again. Seizure number 3. After suctioning her and giving her more meds, it stopped. We stood next to her, played songs our phone and told her Hadley was playing with Addy and Declan. While sitting there with her we continued to notice weird involuntary twitching like movements, which we later found out were partial seizures. Then that lead to yet another seizure, same thing, 4th time, 45 seconds. Sucks yet again. Another dose of meds to stop it and a quick visit from the team saying they were admitting her to the PICU. I jumped into momma bear mode and said "No you are not, we need to transfer her to Stanford, my husband and I work there and we want her with pediatric specialists." I know that was probably the most attitude I've ever given someone in my life, but the doctor was beyond accommodating and understanding. Mason and I both got on the phone with our co-workers, patient placement, critical care transport and management at LPCH to get the ball rolling. During all this hustle and bustle to get her transferred, she seized AGAIN. Five times at this point. F.I.V.E tonic clonic seizures. Shortly after we were transferred to LPCH while I went home to get clothes, check on Hadley and get a car.
While Mason stayed with Sloane and transferred to LPCH. Meanwhile, let me tell you a little about Hadley. She witnessed the entire thing. She's 4.5 years old and was a absolute rock star. She was sitting right next to Sloane when she started seizing, she ran to get Mason's phone, put Georgia in the bathroom, opened the door for the paramedics and stood in the hallway calm until Rose came to get her. She stood there in the hall watching the paramedics tend to her baby sister, calm as can be. Definitely didn't get my genes there. Amazing reaction. We have recently been talking about what to do when we need to call 911 and boy did she get to witness a situation first hand at an early age. Santa is going to be good to her this year.
Moments later I arrive at the PICU up at Stanford with Rose, my lovely chauffeur and emotional support. Sloane yet again is just not herself, hooked up to all kinds of monitors but is crying. Crying!!! She's not lifeless looking and is getting some spunk back. Since she was in the PICU, only one parent was able to be with her, so Mason stayed and I went home to provide some sort of normalcy to Hadley. The report for the evening was that Sloane slept for only 1 hour total and screamed in delirium the rest of the night. Tough, so tough. PICU environment, beeping, wires, tubes, IVs is no joke. I met them the following morning at 7am to find her yet again, angry, biting, telling everyone "bye" and completely delirious. Her eyes were not quiet right and she couldn't stand on her own. Her mood though was rather reassuring that she was getting back to herself, so we were transferred upstairs to the acute care floor and waited. Neurology met with us and mentioned she was in a slightly higher risk bracket for a seizure disorder due to her port wine stain, although her initial MRI at 4 months old was normal. We made the decision, easily, to do imaging of her brain with anesthesia to determine if this port wine stain has caused damage to her brain, all these seizures had caused neurological damage and if there was signs of epilepsy.
Fast forward to hours upon hours of being NPO, not being able to eat, restricted inside a hospital and not being able to walk independently. She was a mess. Hot mess express. She had moments of calm and distraction getting stickers from the library, playing in the playroom and riding in the wagon around and around on a scavenger hunt for hand sanitizer. We saw all our friends, screamed, waved hello and avoided every elevator with someone with food or drinks. It was tough, after enough was enough we bathed her, changed her hospital gown and laid her down. She slept. Praise Jesus, she slept for 12 hours!!! We even were able to wake her up to give her the anti-seizure medications orally and she fell right back to sleep. I stayed with her this night while Mason returned home to Hadley. Tough having to separate, but yet we needed to give Hadley the much needed attention and tell her how Sloane was doing. Hadley was telling her teachers at school that Sloane was sick and she wanted Abuela to buy her a milk and muffin at Starbucks. She missed her sister. :(
Fast forward to the MRI...so strange and sad to be bringing your child to the department you work, yet so much respect and gratitude for my team. So much love I have for them. The anesthesiologist was able to mask induce her while she was asleep on Mason's chest and Sloane didn't even wake up. Another blessing from God! By the time we saw her in recovery, she was smiling, asking for juice and we seemed to have our girl back. By the time we made it back to the room we had already heard "Her MRI is NORMAL, you are going home." Shortly after Neurology came by to meet with us explaining that there was no sign of Sturge-Weber Syndrome (the problem with her port wine statin), no signs of epilepsy, and no neurologic damage from all the seizures. Blessings, prayers answered and smiles all around.
The ending diagnosis is febrile seizures, although she presents as a complex case and atypical as she is on the upper age of a typical febrile seizure and since she had so many tonic clonic seizures and partial seizures. Also since she had so many seizures, there is a higher likely hood she will seize again, therefore we are home now with anti-seizure emergency medications. We sit and wait with lots of anxiety for another seizure. I watch her eyes and body movements like a hawk and buy new baby monitor chargers to keep an eye on her at all times. I feel like I'm sitting on a land mine just waiting for he next.
While the 48-56 hours we were going through this, we had an outcry of support. Thank you to the Engine 9 fire team, Rose and Mark for saving the day with our girl Hadley and driving me around, and all the endless texts/visits from friends and co-workers at LPCH. It is so so tough to be on the other side and is something I hope nobody has to ever experience but I'm grateful we have our girl back, dancing with her hands on her hips, discovering the magic of Christmas decorations and playing with her sister. The moment of proud-ness we have for Hadley is something I just can't describe. Her bravery is just amazing.
This is Chapter 1...hopefully there is not a Chapter 2.
