We had Leslie in the ER on Friday. It was scary. She was at my parents house that afternoon, dozing on the couch, when she sat up and said her heart felt like it was beating funny. My mom got ahold of me, and we decided to take her in to get checked out.
They immediately hooked her up to the heart monitor, started an IV and drew some blood. Her vital signs were great. The monitor showed her heart beating in a normal sinus rhythm, with pretty frequent PVCs (bigemeny, just like me!). Later into the ER visit, her heart rhythm started doing something that I immediately recognized from back during her ventilator/ICU stay. I don't read rhythm strips, but I knew the doctors didn't like it then, so they shouldn't like it now, either. It's a PVC that can turn into ventricular tachycardia. She was having ventricular tachycardia back when she was at Henry Ford Main, and ventricular tachycardia will fire off her defibrillator.
They way it is frequently described to us, is if her defibrillator fires off, it feels as if you got kicked in the chest by a horse. It is pain that will bring you to your knees. Sounds ridiculously unpleasant, no?
The plan for her ER visit was to leave her on the monitors, and draw blood to monitor troponins, which is an indicator of cardiac damage. This is typically done at hours 1, 3, and 6. They said if hours 1 and 3 were fine, then she could go home. Hour 1 was normal. We waited (and watched the monitors...total deja vu) until the second blood draw came. She also got 1 gram of Magnesium, because her magnesium level was slightly low. Finally, they came in to tell us that her second troponin was also low. I immediately tried to argue her being discharged, telling them about the v-tach she had at Main, and this rhythm that keeps showing up could cause that. The doctor agreed and said it was still fine to send her home.
Now he never actually SAID this, but I'm no idiot, and I firmly believe that they sent her home because should her heart start showing v-tach, her defibrillator will take care of it. Now pardon me, but if I can avoid having my sister go through immense pain, I WILL. I was not not not happy with this decision. I'm calling tomorrow to see her doctor with her.
Other than this, she is doing okay.
She has started taking both Namenda and Aricept to help improve her memory. These drugs are commonly given to dementia patients or Alzheimer's patients, and that's great. But in MY mind, my sister will NOT be like this the rest of her life. She will get better. These drugs both have the side effect of causing fatigue. The LAST thing Leslie needs is to feel tired! I hope to discuss this with her doctor, too.
I wrote in my previous blog about how I can't accept this new reality. Well really, I just can't accept ANYTHING. I question everything. Are we doing enough? Too much? These medications, are we not asking enough questions or are we just taking whatever they prescrible and giving them to her? Are there better therapies out there? More, more, more! I just want to know more about what will help her.
As far as Leslie improving, I truly don't feel she is right now. If you compare her now from what she was back in the hospital, then YES! She has improved tremendously. But right now we are at a total standstill. She is a shell. No emotion or expression. Sit her on a cough with no stimulation and she will be perfectly content with that. If she feels hungry, she'll just sit there hungry. If she feels tired, she'll lay down and likely sleep for several hours. She can't get enough sleep.
The Leslie we love is gone. The loving, caring, would do anything for anyone part...gone. And has been gone since September 20. We want THAT Leslie. The shell of Leslie is nice, because we can look at her, touch her, and play with her hair, but until she starts showing me that it's HER that's in that shell, I can't be happy about it. Talk to me, call me, show some sort of interest in me that isn't so forced. I would love that.
I don't know. But I won't accept nothing. We need SOMETHING.