First...I'd like to share the pictures Holly took of our family! We were afraid none of them would turn out...but Holly is sooo talented....and I am very excited about the shots she got! Thank you, Holly for capturing such a great shots of our family...and thanks for photo-shopping my tan lines :)
It was a rough few days... Kendall hates the hospital. As soon as someone tries to mess with her, she freaks out. She doesn't like anyone messing with her head/hair, so it was inevitable the EEG tech would have a rough time.
After the leads were placed, it took a very long time to calm her down. We read books, played with the iPad, took walks around the hall...but she was still not having any of it. She kept saying "go home" over and over again. The poor girl cried so hard and loud she made herself hoarse and croupy.
Remember the issues I had a while back with the hospital and insulins?! Well, I even received a fancy letter stating they resolved everything and each time we were admitted we would have diluted Humalog and brand name Keppra. Thankfully I planned ahead and packed everything...because they definitely didn't have either one. In the middle of holding Kendall and pressing the button, I was dealing with the pharmacist and risk management team trying to get our home Diluted Humalog back. They weren't going to allow us to use it...long story, but our Endocrine Dr. is the head of the department and out on medical leave. I asked "risk management" aka some stupid lawyer sitting behind the phone line, what they wanted us to do. He said the pharmacist would distribute the equivalent dose of their non-diluted Humalog. By the way....that meant eye-balling 1.67 units. Yes. 1.67 units on an insulin syringe. Ridiculous. Before I was forced to rip the wires out of the wall and leave, the Endocrinologist on call insisted I get my meds back and give it myself with the understanding the hospital had nothing to do with it! Which is what I wanted to begin with!!! Hospital politics. Ugh.
Anyway, Kendall wouldn't sleep, which ended up being a good thing. (thankfully my dad came up so I could get dinner, and stuck around til she was out for the count) She had herself so exhausted she showed plenty of the seizure like movements I've been concerned about. When she did finally fall asleep, she had a decent stretch of rest. (or so I thought.)
The next morning the Dr. came in to dismiss us, and went over what he could see so far. He made it a point to say it wasn't his official report, but based off of the episodes I pressed the button on, which he quickly reviewed. He said I was definitely a little "jumpy" meaning every time she had a jerk from gas or her tone, I thought it was a seizure. (didn't hurt my feelings....that's why we were there :)) Out of the 32 times the button was pressed, 28 of them were definitely not seizures. The other 4 very well may have been. When I say 4, I mean 4 spasms...like she used to have. Just a quick jerk of the arm and her head and eyes darting to the side. He said it was hard to say, because when kids Kendall's age are overly tired, they often have myoclonic jerks before falling asleep. There weren't any seizures that he could see in her sleep. Her EEG on the left side was almost normal, and her right side was a little slow. He is still thrilled with her progress (given the fact that 1/4 of her brain is a porencephalic cyst) We will continue the Ketogenic Diet Wean (now....putting her on a normal Diabetic diet by Thanksgiving) but he will definitely not be taking her off the Keppra any time soon.
I thought Kendall had a decent night, but according to everyone in the observation room....she needs to be on something for sleep. I have just become used to adjusting her every 2 hours when she tries to roll over and fusses, and she usually goes back to sleep. In the hospital, they don't allow you to sleep with the child, so I had to get up and down across the room. Apparently I was up 18 times from 11-5:30...I tend to wake up easily, so each time she shifted or kicked off her blanket, I jumped up to put it back or put her passy back in. So I think I contribute to her waking up. Now that we don't have to worry about seizures while she's sleeping, I don't have any excuse not to put her in her room for sleep. I plan to try that first, then add melatonin if she's still restless. I hate to add more meds to her already long list, but since melatonin is all natural, I figure it's worth a try.
Her enzyme results from her muscle biopsy are still not in. He asked me to give them another 2-3 weeks. Weird, since he said that 2 weeks ago....