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It's like he knows....
- Dec 15, 2009 at 3:17 PM
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- Comments (8) Total Views (172) Everyone can see this journal post.
I think this must be the "last hurrah" For Elijah's seizures! He seems to be getting worse and worse so steadily now, and it's all I can do to hold on to the hope that his body is getting all of the seizures out now, since he wont be having any more after surgery!!!
On Saturday, he had his longest new seizure yet. He started with the head turning to the right, then his whole body, and we knelt beside him and called his name in vain... Then when he was about to fall over, my husband gently laid him down across both of our laps, where he stayed perfectly still, back arched, eyes rolled back in his head and completely unresponsive and stiff for what felt like a year, (but was probably more like a minute...)
After he came to, he just started screaming and thrashing, and was totally uncontrollable for about 10 minutes. Trying to throw things and hit us. It was heart breaking. I know he was SO scared and SO angry, and there was nothing I could do to comfort him. My husband was in tears.
The rest of the weekend, he had his normal seizures pretty much constantly. The ones where he drops his head and throws his arms out, and makes this wretched gasping sound over and over again for up to 45 minutes at a time before getting a small break in between batches.
Then today, for the first time ever in one day, he had 2 of the new, (head-turning), seizures... And still there is nothing to do but hold on and wait. I could call and BEG them to get him into surgery sooner, but with only 3 weeks left it seems silly to freak out now. I'm sure that if he starts to aspirate or stops breathing during any of his seizures the doctors will do something to get us through until January.
I've got this knot of panic in my chest ALL the time now. Just waiting for "the other shoe to drop" as they say... I even went to my Dr and got a prescription for Xanax, but luckily, just knowing I have the pills around in case I realy start to fall apart has been enough to stop me from needing to take one.
Last time before surgery, four years ago, it was the same. Elijah was declining so quickly. I know that he probably wouldn't be here today if it wasn't for the surgery, which stopped his seizures for 9 months, and when they returned they were SO much smaller and less intense... and only now are they getting to the point where I am VERY scared for him again. It took four years for his seizures to get this bad again after the last surgery, and I HOPE that this time the surgery will finish the seizures for good.
It seems crazy to me that we've been in this holding pattern, with the seizures only VERY slowly progressing for the last 2 years, (since they came back again after a brief reprieve in 2007), and now suddenly right before massive brain surgery he is developing new types of seizures, and even his normal seizures have spiralled out of control... I feel like it's almost his way of telling us this is the right choice. The ONLY choice. No matter how awful it's going to be for him to lay in bed with his skull open for 7 days in between 2 huge brain surgeries. No matter what the recovery looks like, or how much he will hate me for putting him through all of this pain and fear again. We ARE doing the right thing.
I wish it didn't take my baby boy suffering so much recently for me to finally feel sure about our decision. But there is some relief in going into this, and letting teh surgeons take out more of his left hemisphere, knowing that I really have no choice. That even though this operation is "elective" according to our insurance, the alternative is so much worse than most of the risks of the brain surgeries...
In about a month, I will be writting a journal on here, and updating my "tickers" to mark each minute, then hour, then hopefully days without seizures. I will be talking about how long he's been seizure-free, instead of how long since they returned! I can't wait!!
January 7th and January 14th are the two operations, please keep my boy in your thoughts next month! :)
Comments:
OH Mama... I will be thinking about you constantly!! My prayers are with you, your baby, and your family!! I hope the time, waiting, passes as quickly as possible!!!
I know you are not christian, but I hope you do not mind I have put your family in our churchs Prayer circle. I wish you all the best and say prayers for you all often. Hugs and much Love Elyssa!
Just wanted to send good wishes your way mama! Stay strong I will be sending good vibes your way often in the next few months and waiting for updates when you find time for them
prayers what a scary time to wait God bless
Your family will be in my thoughts and prayers...I hope and pray that everything turns out for the better next month!!!
I know this is so heart breaking for you to go through. I don't what else to say other than I hope and pray the surgery goes well. I am so sorry!!!
I am sitting here with tears in my eyes just reading this. I wish I lived closer so I could be there for you
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(((Hugs))) Oh Elyssa, you are so much stronger than even you know. Somehow, you will all get through this last month. I am sending good thoughts for you and Elijah and can't wait to see your new tickers once he has had his surgery.
- urbpro
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