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Tuesday, July 31, 2007

Details of the Aftermath

Since Ellie did not have meningitis the seizure was most likely caused by an ear infection we did not know she had. She did spike a fever the moment we entered the hospital and her white blood cells were very slightly eleveated. What this also means is that her pain tolerance is so high, a really bad ear infection did not reduce her to tears but only made her a bit grumpy. The implication for me is that I need to print out picture symbols of body parts and work hard with her on understanding pain and get her to start identifying where, exactly, it hurts. Ellie knows all her body parts but she often has head pain so if the pain is in her head, ears included, she just puts her hand on her forehead. She is usually good for only one round of where's your aowie before she gets bored and wants to "play" something else so I need to get streamlined about my process.

So why the much elevated protein levels in her cerebral spinal fluid? This is the scary answer from her Neurologist - she may have constant irritation from all of her shunts - three in all in her brain. Implications - no one knows. Effect on her - pain. Effect on me - scared shitless.

This is, like some of the CP moms have said, one case of poor baby. Ellie has been really shaky all day. It must be not only fatigue because she has been sleeping allot between meals but from the narcotics leaving her system. I checked her eyes tonight and they were dilating fine at least.

The upshot for me is a massive migraine and chest pains because I can't sleep worrying that she will be in her room, alone seizing. I might just start sleeping in there on her therapy table or beside her in the bed. It's better than crutching in there at ever single slight noise which was about 10 times last night - hence my migraine.

I wish I had more answers about how to help heal and soothe her irritated brain. I am her mother. It's my job to keep her pain free and happy. So what can I do to soothe the pain from thin bits of plastic in her brain? What a bizzarro, twilight zone type of question that is for any mom to have to ask themselves, is it not? Bizarre but truly asked.

I am seriously wondering about things like acupressure, reiki, cranial sacral, hyperbaric - which we know has helped lots of kids reduce seizures, and any other alternative therapy that might help Ellie. Because medicine doesn't have any help for this except to up her seizure medication dose, which I gladly did after this last one, or give her a new shunt, which she doesn't at the moment need, thank all the angels in heaven.

Any thoughts on alternative treatments that might help Ellie's irritated brain heal will be totally appreciated (though I have to say I don't think the whole stem cell thing is safe enough yet to try). Also, any thoughts on how she can safely cleanse the toxins left over by the narcotics they had to give her for this last seizure which included one dose of valium, and three doses of Adivan (not sure how to spell that) and a huge does of Fossfentinal? She is shaking and her head control is worse than it was. She is playing and responding to things as she did before. She is still reading and herself congnitively just very shaky and a bit pale physically.

Can I just hold her forever and never let go - would that work - would that be enough?