Where did March go? I think it takes at least a week to fully recover and recollect your thoughts when your child has been in and out of the hospital like Jenelle has been. Finally, I think it's safe (knock on wood) to say she is back to normal, and life is getting back to normal too. So where were we on the update?
After the doctors figured out the issue with Depakote and her ammonia levels, it took a couple more days, and a final big poop, for Jenelle's ammonia levels to return to normal and for us to start seeing our usual giggly, happy Jenelle. We started a new seizure medication called Zaronton, and for now I think it is helping.
On Tuesday March 17, Jenelle had a 9 minute absence seizure in the hospital while hooked up to a monitor for her heart rate and oxygen levels. While seizing, Jenelle maintained a 100% pulse oxygen level, and a very good heart beat. The only time her oxygen level started to de-stat was after the nurses provided Ativan which stopped the seizure. While I really don't like her having these long absence seizures, I am grateful that I witnessed a long one while being reassured that her oxygen and heart rate was fine.
Once Jenelle's ammonia levels were normal, the doctors were ready to discharge Jenelle - however, she was still lethargic, constipated, and not herself, so Brett and I objected. We wanted a plan for the seizures because we were tired of calling 911. On Friday, we met with Dr. Tran and General Neuro and we agreed to send Jenelle home on Onfi, a lowered dose of Felbatol (to help with sleep), and Zaronton. Dr. Tran says she may want to "flirt" with Depakote again down the road, but Brett and I are not convinced. It's obvious Jenelle gets very sick on this drug, and while you can take levo-carnatine to help counter act the metabolic issues, I'm not sold.
Our new Seizure Action Plan is that we do not need to administer Diastat for an Absence seizure until it goes longer than 15 minutes. Scary thought, but like I said, she was OK, and absence seizures are not as violent as say a grand mal. Yes, even I can find optimism and a silver lining in a 9 minute seizure! ;)
So, you know how it goes with hospital discharge... They tell you that you are going home at 10:00 AM, but really you leave 5 hours later. Jack was really missing his sister, as were Aunt Nicki, Grandma & Grandpa, so we left the hospital and met everyone for a late lunch at Cafe Rio around 3:30. Brett and I went into get food and left Jenelle with everyone outside. Just as we sat down, Jenelle started seizing again. Dr. Tran had increased Jenelle's Diastat from 10ml to 12.5 ml and I didn't have the new prescription yet. We were literally across the street from the fire station, so I choose to not give the small dose of Diastat, and call 911 after 9 minutes. (We didn't know about the 15 minute seizure plan yet) Wouldn't you know, the ambulance got lost driving across the street! So paramedics arrived later than expected and gave Jenelle Versed at 16 minutes. She came around, and off we went back to CHOC ER. It was truly surreal and unbelievable.
Thankfully, at the ER Jenelle was back to her normal self. They really didn't take any tests or treat her. The Neuro Department told the ER staff that they were comfortable sending Jenelle home and to give her more time on the new medication. Zaronton is different and it does not need a "loading dose" to be at a therapeutic level, so two hours later, we were home. Sleeping in my own bed never felt so good.
We kept Jenelle home the rest of the weekend, and sent her to school on Monday. We are seeing very short absence seizures, but back to baseline for Jenelle, so that is good. Some of you have asked if we feel like we should have stayed at UCLA. To be honest, I think this exact same situation would have occurred with Jenelle's seizures regardless of where she was being seen by a Neurologist. Unfortunately, we think this latest breakdown in seizure control is due to puberty onset. In fact, it is probably easier now that it is so close to home. So yes, if you want to meet lots of cute firemen... have seizures that go over 15 minutes requiring calls to 911. Four ambulance rides in less than 10 days - Wow! A different EMS crew each time, all lovely, kind, caring and yes handsome! Oh dear, maybe my little girl is just doing all this to meet cute firemen? Oye!
Thank you all for the prayers, and most importantly, thank you for the special notes to me. Honestly, I'm not doing anything different as Mom to Jenelle than any average person would do. Sharing her with you helps to advocate for kids like Jenelle, and is therapeutic for me!
As always, I'll keep you posted.