Recap of recent hospital visit.....

Dravet strikes again! This past Wednesday, Olivia had a status seizure. It started during her bath a little bit before 5p. Just as her nurse began rinsing the shampoo out of her hair, she went limp like a ragdoll. We quickly jumped into emergency mode, giving the rescue drug, applying oxygen and suction. This time was complicated by the fact that she was right out of the tub. We had to get her dressed in the midst of all this chaos. I had made the decision after the last status seizure to avoid 911 if at all possible. We have had so many bad EMSA experiences that I truly feel they are a detriment to us. So after administering the first dose of rescue med and getting her quickly dressed, we made a mad dash to the car. The nurse sat in the back holding Olivia, keeping the oxygen on her, and we gave the second dose of rescue med before leaving the driveway.

It was rush hour traffic. I drove like a machine. I put my flashers on and just laid on the horn the whole time. If I came up behind a car I would honk and honk and honk continuously while waving my arm for them to get over. Thankfully, this worked on most cars we encountered. It was like a scene out of movie. An extremely surreal experience.

We made it to the emergency entrance, ran up to the desk shouting "status epilepticus," and our nurse said, "open the door, NOW!" So, they did. They got us right back in to a room and started assessing the situation. We made it from the start of the seizure to Olivia laying on a bed in the ER in 15 mins!! We have NEVER made that kind of time when EMSA was involved. It just confirmed our suspicion that, when the circumstances allow, we can do a better job than EMSA has.

Once we got her into the ER, it was a complicated situation just like last time. The seizure type she was experiencing was difficult to define as well as difficult to determine if it had stopped. She wasn't having a typical Grand Mal (general tonic-clonic) seizure where the body is convulsing. Those are a lot easier to recognize as well as easier to tell when they have stopped. If the body stops jerking, you can assume the seizure has pretty much ended. No, this one didn't involve much jerking at all. The ER doctor told me we would pretty much have to have an EEG to confirm whether she was still seizing or not. If we don't know she is seizing or not, then how do we know exactly what to do next?? Well...we don't! So, she got loaded with SO much Attivan and Versed that they had to intubate her to protect her airway. The more of that type of med a person gets, the more likely it is that they will stop breathing on their own. Being intubated is a risky thing, especially for little ones. And, once they are intubated it is hard to get the docs to extubate (remove the tube). So, just like the last two times she was intubated, she fought the tube and wanted to breath on her own. But, they just wanted to keep her heavily sedated in order to keep the tube in. It is a horrible situation. They have to tube her because they have given her so much medication, but they have to keep giving her even MORE medication to keep the tube in. Arrrgh.

Thankfully, this time and last time, the PICU (pediatric intensive care unit) doctor was not afraid to pull the tube as soon as we got up to his floor. Oh how I wish we could just skip the ER and go straight to PICU. You would think the ER is the place to be in an emergency, but I do not necessarily agree---same as I do not agree that EMSA is any help to us in an emergency. My girl has such a rare condition that generalized docs are often lost. This puts so much pressure on me to make decisions regarding her medical care with little to no helpful input from the doctors at hand. What if I make the WRONG decision? How do I live with that? I cannot express the heaviness of these situations. My shoulders strain under the mantle of this responsibility. But, let me say that I am more equipped today to handle it than I was a year ago, even 6 months ago. I have worked hard to learn and understand as much about Olivia as I can. I do not turn away from the challenge. I grit my teeth and burrow through. I do this because there is no other option. I will not let my ignorance or inexperience cause her to suffer if I can help it in any way. I stretch my body and brain beyond the limits, so that she has the best possible chance to survive, to live a quality life. I am not special in any way. I am not superhero strong. I am a mother, plain and simple.

Our PICU stay was very calm this time. Olivia actually slept the entire night. We had the best in-patient nurse we have EVER had, so I was able to sleep a couple hours as well. She woke up bright and early calling for me, asking for high five. Haha. She was still able to walk, though she was wobbly. She did (and still does) have an upper respiratory virus--which almost certainly caused the seizure--so she didn't feel great but was still in decent spirits. We were discharged before noon. Olivia has been doing well since we've been home. She is still fighting this virus, so she tires easily and is battling a lot of congestion. But, it does seems to be on its way out.

The neuro recommended an increase in one of her seizure meds this time, and I have decided to allow it. It has been over a year since I have allowed a med increase, so I think it is probably time now. In the last couple weeks her daily seizures have increased almost threefold some days. Hopefully, this increase will bring it back down to her baseline of about 25 seizures a day or even less.

The main thing affected by this last big seizure seems to be her speech. She has been doing a lot of babbling mixed with some words, but she has also been sort of making up words that we haven't heard before. Just today, it seems to be improving, so that is very good news. Her ability to regain lost ground always amazes me. My biggest hope is that this always continues.

Sorry this is so long, but I had a lot to say I suppose. :)

Life in this moment is...two steps forward and 1-1/2 steps back, so we are still gaining ground!