Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

So here I sit on Lily’s hospital bed while she sits in her wheelchair. We like to switch it up, you know keeping it exciting. It is 8:30am and we are on hour 48. I’ve enjoyed about 4 rounds of Family Feud, 8 rounds of Solitaire, 4 rounds of Scrabble, kept up with status updates and watched Food Inc (we need a bigger garden) all on my itouch. Lily has enjoyed Princess and the Frog about 2 times and lots of PBS. Lily has had some staring spells that I wanted to be evaluated. She has had clusters of jerks. She has had some weird things I have never seen before and she had some silly laughing spells. All these incidents I hit the “mark” button and had the Dr. (we actually had Lily’s neuro on call Tuesday and Wednesday so that was nice, now it is July and a new guy is on call) look at each episode in question. Some results are, staring spells are indeed seizures. Clusters are seizures, weird things not seizures, laughing not. I was overjoyed that she was laughing because she thought something was funny, unfortunately something she thought was funny was most likely a quick seizure before, but the true belly laugh was all her. I have been discouraged by being able to watch her EEG the entire time we are here. She seizes all the time. Just twitch her and there, sometimes big, some small. But her brain is just wildly out of control. Her neuro said her EEG is pretty much a perfect fit for LGS (lennox-gastaut syndrome).
This is not a new diagnosis, but her EEG was never exactly to the diagnosis and now it is. This is not uncommon for children with CDKL5 to have LGS, it is just well… it just sucks. It makes things more complicated and to ever pray, wish, hope for seizure control is pretty much out of the question. She could go through periods of no seizures but it is all par for the course with LGS. I guess the only thing we need to do is prevent her having a big seizure that will end her up in the hospital (status epilepticus). Sigh.
On call neuro just came in and actually gave some good news. He said Lily has some periods of nice normal EEG pattern. He agreed with the LGS diagnosis and said it was because of the CDKL5 not the other way around, which I already knew. He was very nice and maybe handsome as well…but that is neither here nor there. Andrew thought so too so it’s all good. Our neuro upped Vigabitrine (Sabril) and Clobzam quite a bit yesterday and the other neuro said the past 24 hours have been very decent on EEG, so as much as I hate to have Lily max out on a dose I guess it is for the best and I have proof that it is indeed helping so that makes me feel better.
I have to stay hospitals have really upped the customer service these past few years. We have been frequent flyers in hospitals for almost 8 years now, we have had a little break from bringing Lily in, it had been 3 years, but my goodness it has changed in 3 years and changed so much in the past 8! The nurse staff has been wonderful. The food, decent, get this, I get a tray along with Lily and I call and order what we want when we want it. Like room service. There has been a therapy dog come visit, some organization bring gifts to kids in the hospital. Child Life has evolved vastly in the past 8 years… wow! I really can’t complain, having a lap top with wifi has saved my sanity and honestly Lily and I rarely get this kind of togetherness with just us, so other than sharing a bed with her, it has been a pretty decent experience, all things considered. But I did come up with a little joke for my dear eldest daughter, what is worse than sharing a room with Lily at night? Sharing a bed with her. Lily SUCKS at sleeping. Holy cow! I cannot wait to sleep in my own bed tonight! She was up up at 4am yesterday and she was so up I had to get out of the bed because I could no longer handle her elbows, knees and feet in my face, the child is wild. Today she woke up at 4am but did go back to sleep a bit off and on until 6am and then we were up up. But I will take 6am over 4am any day.
So we are just waiting to have the tech remove the crap from her head which I am not looking forward to then we are out of here. I will get home and Grandma Cheryl will have to leave, that is a bummer, but so grateful she was here to watch the other two, whom I miss tremendously! Oh I cannot wait to get home!
I am sure I won’t be on before the upcoming holiday weekend, so enjoy yourself all you Americans and enjoy the land of the free!
South Dakota peeps! One week!
Oh and one more little tiny thing… I am doing a fundraiser for IFCR! LilyAnna Blu’s Splash for a Cure August 22, 2010. Plan on being there, more details to follow! Oh man I have a pit in my stomach mentioning this! I have so much to do in little time. I can’t wait, but I may turn into Satin until then. Locals plan on being there! Non locals, plan on donating 🙂 More info to come!

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