Posted on May 9, 2018
May 8th Update: We have a few good things and a few not so good things going on, but let's start with the good news first.McKenna is completely off the pentobarb as of 10:55am CST. She had remained seizure free throughout the night and tolerated the 3:00 am 50% reduction well, so they made the decision to stop it all together. Yesterday they removed the Bair Hug that was regulating her body temperature and her edema is down remarkably. She's looking a whole lot more like herself! She was trying to take some breaths on her own there for a little while, so that's good. They have started to feed her her own special concoction of lipids and electrolytes. They have blocked her G-tube in hopes that her bowels will begin to work on their own.
Now for the not so good... Not horrible, just disappointing. McKenna had her first seizure-like activity in 96 hours at 11:38 am. It appeared to be some small cluster seizing for almost a half hour, but there were no overt signs in her stats. It's not like it was before when she was in status (one huge continuous seizure) for a long period of time. So they gave her a loading dose of phenobarbital to get control of that.They've figured out that she's pretty sensitive and they're trying to find the right balance of what works. The positive news is that there are several different meds they can try before we have to put her back on the pentobarb, should there being anymore activity. Our girl keeps them on their toes that's for sure!
If you take a look this picture, the pink lines are McKenna trying to breath on her own. Such an awesome sign! They took her down for a CT this evening and we're currently awaiting the results. This morning when they gave her the phenobarbital, it stopped the seizures, but also took her one step back from waking up. So McKenna's brain activity was coming back and then Neuro made the call to give her the pheno and it slowed her brain activity again. The doctors did not anticipate that happening, but it’s not uncommon. So we went one step back with the seizure activity and then one more step back with it lowering her brain activity again. However, we have made A LOT of progress since things were so bad on Friday.
I know that when most of you think of seizures, you think of the convulsive seizures that epileptics experience where there are physical symptoms that you can observe. What McKenna is experiencing is called a subclinical seizure. A subclinical seizure is a seizure that does not present any clinical signs or symptoms. Such seizures are often experienced by people with epilepsy, in which an electroencephalogram (EEG) trace will show abnormal brain activity, usually for a short time, but the level of consciousness is normal. Her brain is just firing off rapidly because it's being irritated by the blood. So basically, we can be sitting right next to McKenna when she is seizing and have no idea.Most of the time we rely on Neuro to tell us if she's having one, which they track in a completely different area. If she has one, the phone in the room rings. Sometimes it rings for other things, but every time it does, we all hold our breaths. I personally refer to Neuro as "the Great Wizard", like from the Wizard of Oz... All knowing and all seeing. Cameras monitor McKenna from various angles and they are constantly monitoring her EEG from their department. It can kind of be a little surreal, but we are so thankful there is always, always someone monitoring her 24 hours a day on top of her personal nurse that never leaves her room. I don't know what we'd do if we weren't at Mayo with the best of the best. We are so very grateful McKenna is in such good hands.
May 9th Morning Update: Miss McKenna had a rough start to her morning. We got the CT results back. The good news is that all the blood is gone, so that's a step in the right direction. The not so good news is that the two areas of brain damage are still present. We won't know what that means for her until she is able to wake up. More good news... She moved her bowels on her own. So yay for poop! She had four seizures about 1-2 minutes each this morning around 4:30 am, so they increased the phenobarbital and are giving it scheduled, plus added another med (not sure what that is yet). That seemed to get them under control. They want to do another scan this morning to see if they missed anything.
One of the doctors sat Kassy down and told her that she needed to stop looking at the future and start focusing on the day to day. That's probably from too much of us asking what each thing means for the future or when we can get better answers as far as what is causing the seizures. It is so very hard to wait and wait and not know. So... Day by day it is. We know it's going to take time... It's just hard. It's just hard.
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Thank you so very much for the continued love and support. Lee and Kassy are just overwhelmed and it helps them remain positive. - Laura