Lennyn had another EEG today. Wednesday’s episode was so large, it’s still showing on her EEG. There was no current seizure activity but there were indications of a recent large event. There was also slowing around her shunt. She’s slowly coming back to life. A seizure of any magnitude really takes a lot out of you and it shows as she’s still not 100 percent her normal self.
Her neurologist has started a large dose of keppra twice daily and we now have rescue medications. We have one shot taped to the fridge and another must go with her where ever she goes. She responded well to the rescue meds the medics gave her so her doctors are hopeful this will also bring her back if we have another large seizure. She also did very well on Keppra before so they’re hopeful. If she continues to have seizures we will have to add more medications.
She was most likely having focal seizures that we were not picking up on, which is normal as they can be so minute. We were informed that a big event like she had doesn’t happen out of no where and there is a build up to it.
It took EMS ten minutes exactly to get to our house so her saturation’s were in the 70s for a little longer than that and maybe another 4-5 minutes to evaluate and administer meds. Because of the lack of oxygen we need to go for another MRI (they were unable to do one in the ER because she was not fully sedated and they should have done one. They also didn’t call in Neurosurgery but that’s another issue in itself). The MRI will be to identify brain damage.
We will go back for another EEG in 3 weeks to see how her brain activity looks with Keppra. The follow up for that will be the next day and we will increase meds or tweak treatment as necessary.
We need to hook up with Pulmonary to have her lungs checked. Because she was absolutely checked out and wasn’t there enough to know to sit up while throwing, she laid there until i frantically picked her up with a massive amount of vomit on her face blocking her passages. Granted it happened fast, she is still at risk for pneumonia if she aspirated. Watching for fevers, coughing, etc.
Neurology was very annoyed that The ER didn’t do a chest X-ray to look her lungs (also don’t get me started). They did an X-ray for a shunt series and I just assumed they would look at her lungs because of what happened but I guess they didn’t.
Pulmonary will be able to get a script for a medical grade pulse ox that will alarm if her heart rate shoots up or oxygen drops. She’s just about too big for her owlet and we were told to not let her sleep alone for sometime until we have something in place.
I’m trying very hard not to dwell on the what if’s and the what if she was in her bed for the night, because she normally is at that time. Lennyn wouldn’t be here. I can’t close my eyes without seeing her laying there, with glassed over eyes, helpless and grey. I’m counting EVERY blessing that for some reason we kept her in the living room much later than normal and we’re there and the medics recognized what was happening and treated her accordingly. We all saved her.
Im going to be raw for a moment. I’m angry. I’m angry we always have to be on alert for a shunt malfunction and now because she’s had recurring seizures, we have to always be on alert for this. How can I ever let my guard down? I think of all these horror stories (Cameron Boyce) and for the first time in over a year, I’m scared again.
I want to get back to the Bree that by brain surgery 4 was a brave lioness ROCKING the mom game and being so strong for my family. I’m far from that right now. I’m on edge, I feel helpless, and I feel like I’m failing Lennyn because of my fear. I don’t want to lose my daughter. I don’t want to have to comfort her big sister who is terrified she’s going to lose her sister. THANK GOD for my husband. The ROCK for all of us. I couldn’t do it with any other partner. We are soulmates made for Lennyn.
Lennyn is so sweet and kind and a ball of love. She doesn’t deserve the bullshit she’s been given. Isn’t the Hydrocephalus enough? The brain surgeries? The brain infection? The brain bleed? The cerebral palsy? We had to throw an epilepsy diagnosis her way too? Pardon my French, but for fucks sake. Please give her a break. My sweet baby deserves it.
Frantically searching for the silver lining in all of this and praying for comfort, guidance and wisdom to pull myself out of this funk and squeezing Lennyn, Ava, and Seth in the meantime. I love our friends, our family, all of you for reaching out. You mean the world to us and we need you all for our morale right now. From the bottom of my heart, thank you.
Please pray for a clear mri (her brain has taken a big enough beating as it is) pray for medication working, and for Lennyn to get a break. Also, if your friends with Ava on fb, please give her some love. She’s super shaken from the last 2 days and needs some extra acknowledgment from everyone. She was SUCH a team player on Wednesday and killed it in emergency mode.
#lennynstrong #nomorebs #jesustakethewheel