Yesterday was blah. Not all of it, the morning was fine, but yesterday afternoon at nap time Marie had a really difficult stretch.
While she's doing so well overall, and we are grateful, Marie still struggles with Dystonia. Daily it is something we manage with her medicine, but also in going through the episodes with her when they happen and providing what comfort we can. For Marie, episodes can last any amount of time, but lately it is 5-15 minuets duration. She will stiffen her legs and turn her feet inward at a 90 degree angle and wring her feet together. She fists her hands very tightly and will either stiffen or pump her arms. She thrashes her head side to side, her breathing is labored and she will break a sweat. While I am not a nurse, her heart rate does race during each episode and they exhaust her. She often sleeps quite deeply following one. EEG has proven that there is no seizure activity during her episodes of Dystonia, it is the movement center of her brain backfiring. Often, episodes occur when she is stressed, overstimulated, in pain, or over tired.
Yesterday we returned home from the new house and lunch with friends at 2-ish. I gave Marie meds, hooked her up to her pump, and laid down with her for her nap. We are trying to break the habit of holding Marie while she is on the pump as she will fall asleep that way and she needs to learn to fall asleep on her own. Preferably before the new baby comes. So, for now I lay beside her when she falls asleep (I like the rest too!).
Yesterday we laid down and she immediately went into an episode. I have learned that there are ways to hold her body still for her that will break an episode, or that completely changing position can bring her out of it. Nothing worked. She became hotter and hotter, sweating, and she was groaning and actually vocalized a few times. Then she began to gasp when she inhaled. Exhaling was OK, but she would breath halfway in, gasp, then finish breathing in. Terrifying.
I hate, hate, hate to see her breathing compromised in any way. They tell us, that as her disease destroys her brain the movement center controlling involuntary and voluntary movement will continue to erode. Eventually this will result in the loss of her brains ability to tell her body to breath. Many children with Leigh's Disease pass away from respiratory arrest.
So, Marie having trouble breathing scares the daylights out of me.
So I prayed, out loud, over and over again. Begging that God stop it because I am powerless when the episodes happen. After nearly a half hour He intervened, Marie took a deep breath, relaxed and drifted off to sleep. She slept quite soundly for 4 hours, not waking until around 6:30 pm.
I was wrecked.
Please pray that this is nothing, the gasping during that spell is not her disease progressing, it is not a sign of her brain deteriorating. I feel that I am praying that the inevitable won't happen, but if it will, will you join me in praying that it not be so painful. That she not have to struggle so? Marie has done so well for so long that the idea of her slipping again is almost more than I can bear, though I know deep down that slip she will, I just choose not to allow it to enter my thoughts and affect now. Now when she smiles so big, laughs out loud, and is so alert and part of things. I can't allow anything to spoil now.
Absolutely terrifying. I hope that it does not happen again. She may have been overtired, or overstimulated. I am going to try to be much more careful with her in coming days. Poor little Mama. After she was asleep though she was so peaceful I had to take a picture. Couldn't you just roll her in sugar and eat her with a spoon? ;)
And then, because Josie was also sleeping and looking so adorable herself I took a picture of her too. She will hate me when she is a teenager.