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.

September 19, I texted Leslie and asked her if she could pick up some gum and pop on her way to get me.

I still have that text in my phone, but I don't read it anymore. I've read it twice. Once when I received it on September 19, and once when I was craving something that proved that she was at one time okay.

The morning of September 19, we spent the morning at our best friend, Kristen's house, to get ready for Kristen's wedding. Leslie and I were both bridesmaids. In between getting our hair done, we sat at the kitchen table, snacking on fresh fruit and chatting while I painted my nails bright red to match our dresses. When it was time to head to the Henry Ford Estate, she drove me in her car. We both took a stick of gum from the pack she bought and chatted nervously.

The day was incredible. The weather was beautiful. The ceremony was perfect. Afterwards, we drove home together. She dropped me off at my house, then she went home to get her husband and we met up at Old Chicago for drinks and appetizers. We snapped a quick picture together afterwards on our way to the car.

The reception was fun. She danced, and would tug on my arm and say "Come ON! You are a bridesmaid and you have to dance!" and I'd pull back and say "I don't dance!"

On the ride home, she rode up front with her husband, and I sat behind her and helped her take the bobby pins out of her hair. We joked and said we were like monkeys because of the way I was picking at her hair. I remember one of the last things I said to her was, "Make sure you use lots of conditioner!"

The morning of September 20, she e-mailed me to say I left my phone in her purse, and that she felt hungover, even though we didn't drink much at all the day before. I wrote her back and said to drink some diet coke, because that always made her feel better.

This was our last "normal" interaction. I wish I had known September 19 what I was going to learn on September 20.

I wish I knew that I would be forced to accept a new "normal".

I wish I savored those texts and e-mails, because they would soon stop. That even though my sister would miraculously survive incredible odds, she would stop seeking me out to talk to me.

I wish I had said more to her that day. "More" meaning, "I love you."

I wish I had been more prepared for what was to come. Mentally, physically, emotionally.

I wish someone would have asked my family and I (and of course, Leslie) if we wanted our lives turned upside-down and inside-out.

I wish, I wish, I wish.

Unfortunately, that's not how it goes. Life doesn't pause and wait for you to catch your breath. It keeps moving, whether you want it to or not. And just because you went through one tragedy, there is no guarantee that the bad stuff won't hit you again. And again. And even again.

I have not come to terms with this new reality, not even a tiny bit.

So many evenings, I sit down to write, but the words just don't come.

There really isn't a whole lot to update on, though. Leslie is doing well. Small, slow improvements, with the occasional set-back. I'll take it, though. Her memory is improving. She can recall things much quicker than she used to. Now the challenge is getting her motivated to share things. If no one talks to her or MAKES her do things, she will literally just sit there. In her own words, "I never get bored."

Therapy is still continuing, and she is now seeing a neuro-psychologist to help with her lack of motivation. I am clinging to the hope that once the weather gets better, she will be more motivated to do things, even if it's just to get some Bob Jo's ice cream, cause I know my sister, and I know she will never pass up Bob Jo's.

As far as MY health goes, no real changes. I had my cardiac MRI a few weeks ago, and it was torture. It started out fine. I was told it would take 1.5-2 hours. HAHAHA! It took...get this...4 HOURS. My body was so sore when I got out of that tube, you'd have thought I just got done with something extremely physical instead of just laying flat.

The MRI confirmed what the echo did...my heart is weak. Not SUPER weak, but weaker than a 28 year old heart should be. I have to continue the Lopressor and Lisinopril, and I am still wearing the heart monitor. I see the cardiologist at the end of March to see what the next step is. It sounds like I will be increased on the heart medications "to a dose as high as I can tolerate" (or in my own words, until my blood pressure bottoms out and I DIE!) and then repeat the echo in about 6 months. We'll see.

That's all for now!

Help me help raise money for heart research!

Let's walk in the American Heart Association Heart Walk on May 14 at Ford Field in Detroit.

I set up a team, Heart Full of Hope, so you can join by going to www.miheartwalk.org, clicking on register, and then looking for my team OR you can go here: http://miheartwalk.kintera.org/mommarn50 which will take you to my personal fundraising page, and from there you can either donate, or click the "team page" link and join my team.

It would be so awesome to have a huge group of supporters, all walking in Leslie's honor!

I never look back on the initial incident as a whole. I always get flashbacks of small things. The horrible cough she had when the ventilator was taken out. The sound of the ventilator breathing for her. Brushing her tangled hair. Wandering the empty halls at 2AM while they gave her a sponge bath. The constant red, swollen eyes from crying so much for her. The moment of panic immediately after the vent was taken out, when they thought her airway may be closing. They called in the doctor and respiratory therapist immediately to see if she might need to be re-ventilated.

There was one night in the ICU that I was staying with her. She was completely nonresponsive, and as I sat there in that dark, cold room, my mind was just racing. The nurse didn't even have to ask me anything to know I was struggling. She offered to call in the doctor to talk to me, and I let her. I remember that doctor so clearly. He was a resident, I believe. I don't remember his name, but he was awesome. He pulled up a chair and talked to me for about an hour. One of the last things he said to me before he left was that I needed to be the strong one for my family. I needed to be the voice of reason. I took that comment very seriously, and I have tried very hard to be the one to not let anyone get too pessimistic about her condition, but also not too optimistic when things were looking very bleak.

Today she is with me. I had a doctor's appointment, so she went with me, and I found myself staring at her hands and thinking "I am so glad I can still see her."

We were so close to losing her. It's so morbid, but I remember when I was feeling so exhausted from all the trips to Detroit and staying the night with her and thinking "If the outcome of September 20 had been different, right now we would be trying to adjust to our new life without her." ..and I immediately felt thankful that I could still physically see her.

She is doing well. She has more good days than bad, but she still has those bad days. Some days her memory is spot on. Other days she goes back to repeating herself constantly. I noticed today that when she does repeat a question, it feels like I got kicked in the stomach because it is a reminder of what is gone.

So today marks day one of wearing a heart monitor. Day one of THIRTY! I was getting annoyed with the 24 hour Holter monitor by hour number 20, so you can only imagine how hateful I'll be at the end of these 30 days.

I also have my cardiac MRI scheduled for the 25th. I have never had an MRI before, but I'm not real worried. I know it's not going to be pleasant, and small spaces don't exactly thrill me, but it'll be fine. I'm more concerned with getting up and out the door for my 8 AM appointment.

I also got a phone call from a different cardiologist from Henry Ford Main who asked if I'd be willing to participate in a cardiac imaging study. Of COURSE I would! They are doing this study to try to find something to replace cardiac MRI's, so it'll be a 3-D ultrasound of my heart. I do this immediately after my MRI.

Last week I started taking the Lopressor Succinate and the Lisinopril. I am so relieved that I really don't feel any side effects, especially since these drugs are commonly given for hypertension (high blood pressure) and my blood pressure is usually normal to low (like 110/70). At one point while I was working, I took my blood pressure and heart rate, just out of curiosity (Lopressor will lower both blood pressure and heart rate) and both of mine were quite low, but I felt fine.

In other news, Leslie is doing quite well. I think her memory is doing a LOT better. She doesn't repeat questions nearly as much as she used to. Right now her biggest issue is her total lack of motivation. It's not even that she has a LACK of motivation. She has NO motivation. She frequently will tell me, "I never get bored." She has started seeing a neuro-psychologist to try to help with this, but it sounds like it is just one of those things that we just have to keep pushing her on. I think it totally works against her that it is the dead of winter and bitter cold. Someone without an anoxic brain injury has no motivation, so it's super hard to do things with her. I am hoping, just as she has consistently shown progress in every area, that she will start to show progress in this area, too, in due time.

Around early December, I started having some bouts of chest palpitations. They were increasing in frequency. I blew it off for a few weeks, but then one night at work, I was having so many of them, I decided to go down to our ER (I work in a hospital) to get checked out.

When they got me on the monitors, it showed Ventricular Bigemeny, meaning every other heart beat was a PVC. I got up to around 30 of them before they stopped.

From that night in the ER, I saw my primary doctor who sent me for a stress echo and I left that test wearing a Holter monitor for 24 hours. The stress echo came back abnormal, showing my ejection fraction to be 45% and the blood flow was sluggish through my left ventricle. Those results forced my primary doctor to send me to Henry Ford Main to see a cardiologist. Not just any cardiologist, though. LESLIE'S cardiologist. If you are a faithful reader of this blog, you remember a post I made that involved him that triggered one of my worst, saddest days of the whole experience. Bed side manner? He has none. But still. Leslie is doing just great, and my doctor thinks the world of him, so I was willing to give him a shot. I don't doubt he is a great, great doctor.

One of the first things he asked me today was if I was done having kids, to which I replied, "I'm not sure." So then he said, "Just don't be trying right now, okay?" Okay.

My heart is not functioning properly. How or why? I don't know. I now have to have a heart MRI and wear a heart monitor for 30 days. I'm also on two different medications for my heart to protect it. From there, I may be having a cardiac cath.

Now interestingly, he DOES feel my heart issue may be related to Leslie's heart issue. He feels there are some genetic ties. Both of us are otherwise healthy, so why would two sisters have these issues? I don't know, and I am determined to find some answers.

I'm not too worried right now. I think the MRI will tell a lot, and I won't go back to see him until March when he'll have the results of the 30 day monitor to see what our next step is.