Kendall cried a lot last night. Nobody could figure out what was wrong. I tried to sleep but couldn't so spent the majority of the night holding her and trying to make her stop. It never worked.
The last thing I remember is the Respiratory Therapist coming in around 4:30, then shift change. I must have finally passed out to the sound of Kendall breathing. The next thing I knew, she was making a really weird noise. I went to the bathroom to brush my teeth and then was going to tend to her.
I went to brush my teeth. I was BRUSHING MY TEETH while my daughter had the worst, Tonic Clonic seizure I have ever seen EVER. It lasted...brace yourself. An hour and 15 minutes.
The med they were going to put into her IV was quickly ordered. Then they discovered she had blown her IV. They couldn't find another place to put another one. Two others were called in, then in the mean time they administered the Diastat. Twice.
Then the chaplain, IV team, every available nurse entered the room. A crash cart was ordered, and I shut down. All I could manage to do was pray.
It finally stopped.
Justin's here now.
She's finally awake and smiling.
The chest x-ray came back normal, but I think she may have another ear infection.
Back on Klonnopin we go, and we will continue the Ketogenic Diet.
The head of the Endo department came in and explained his experience (THE ONLY ONE IN THE US) with Ketogenic Diet and Diabetes. It finally became clear to me how we are going to manage this. We will measure her Glucose in her blood on the same meter as her blood sugar. Our acceptable numbers are quite different from a usual diabetic.
He also is on the Mitochondrial Disease band wagon. But we are treating things as they arise. One day at a time. Her lactic acid levels are OK...right now.
The Epileptologist on call mentioned Kendall's retractable seizures are the most complex to control. He also again mentioned surgery could be a course of action still (he's new,and young, and optimistic) Apparently our expectations for Kendall to be seizure free are a long stretch. I refuse to lose hope. She's a fighter and we are too. We will get through this.
I was assured that the Neurology and Endocrinology teams at Cooks play well with each other in the sandbox, and share their toys. Time will tell.
Please pray nursing is approved by my insurance. Though my attitude may change in the next few days when things still sink in and I have had some sleep, it is going to be tough.
We aren't going home any time soon.
1 week ago