Hasn't my motto all along pretty much been "baby steps"?

Well...more baby steps are ensuing!

Leslie had a follow-up visit after her ER visit. First was with the cardiologist. Amazingly, her defibrillator provides a cardiac monitoring strip of any time we want. The cardiologist could see exactly what her heart was doing, even if she wasn't on the monitors. It was very, very cool. He was NOT concerned with the rhythms Leslie's heart would go into at all. He also assured us that Leslie, right now, has a VERY healthy heart.

We also took her to her primary doctor. Her primary doctor didn't realize that the defibrillator could do this, and wanted her to wear a 24 hour Holter monitor. This was fine with us, but it is just another reminder how these doctors are all working for HER, but none of THEM are working TOGETHER, and it gets tricky. It's all on us to relay information, and that gets stressful!

Anyhow, after rehashing the ER visit (and her doctor seemed a little more concerned, which prompted her to do the Holter, but also prompted her to start Leslie on Magnesium pills).

As soon as she mentioned a new pill and another prescription, George and I kind of smiled at each other... that lead into our OTHER reason for the visit. Her meds.

We all feel she is over medicated. All of her medications serve a great purpose...improve memory, help with depression, etc. But all of them TOGETHER are too much for HER.'

At first I could see the skepticism in her doctors face, but I wasn't backing down on this. I know my sister and while I may not understand her brain injury, I know there are certain parts of her that are her, and nothing will take that away.

Therefore, her dose of Lexapro is cut in half (5 mg) and her Aricept is also cut in half (5mg). Her doctor said if we didn't notice much of a change, they could be eliminated altogether (like we already did with the Namenda).

Now I know I'm not with Leslie as much as George and my parents, but I noticed a pretty big difference! She smiles now. She has expression. She gets excited. She plays with my kids. It has been such a significant change, and I love it.

Last night, my mom and I took her out to RIM (Rehabilitation Institute of Michigan) where she spent about 2 weeks of her recovery to take her to a brain injury support group. I had my daughter, Paris "Hollywood" Hilton" with me (more on that another time..) so I missed a lot of the meeting, but I was able to hear the introductions and they were very refreshing for me. For one, I saw so many people that were just like my sister. A little forgetful, and they'd lose their train of thought while speaking. That's her! One gentleman spoke up, saying how he had just graduated from college as an accountant when his brain injury happened. I literally almost wanted to stand up and shout, "That's not fair, too!" excitedly, but I knew that would be inappropriate.

You see, I really struggle with how unfair all of this has been. Not just the fact that it happened to her, but the timing of it. She just got married, FINALLY landed a teaching job, bought her own home. Things were darn near perfect. Why did it even happen, but why did it happen THEN? The support group was a great way to learn that these things do happen, we aren't alone, and there are people out there that truly understand. I hope to get more involved in it. I thought it was quite powerful.

I love you, Les. Every single day I give thanks for you. You have no idea how much you mean to me. I will forever honor you.

It's kinda funny how this happened.

My mom and I have been talking about Leslie a lot, and how we are kind of discouraged with her progress, or lack thereof. My mom has said since last week how Leslie seems even LESS motivated now, and we didn't realize that was even possible.

So we have started discussing her meds, and how Leslie never used to take ANY medications, except maybe an occasional Excedrin for a headache, and now she was on so many. We started questioning if it was medication side effects that might be limiting her progress. Neither of us knew when her next doctors appointment was, but it was something we thought might be worth discussing.

See, all along, we have had so many different doctors working with her. A neurologist, a cardiologist, a primary doctor, a rehab doctor, and the defibrillator doctor (yes, this was different than the cardiologist). Even from the ICU days, it always felt like everyone was working for her, but none of THEM were working together. Everyone had their own agenda. They came at all different, various times, so the family member that was with her was always different. It was SO. FRUSTRATING.

Well now that she's home, it's no different. The defibrillator doctor has seen her several times and he's the one that prescribes the Sotolol (a blood pressure medication that lowers the shock threshold. Her defibrillator does NOT work without this medication). Her primary doctor has mostly continued the hospital medications, which includes things like a multivitamin, stool softener, and a medication for acid reflux (there may be more, these are just the ones that come to mind) and she has also started her on Namenda which helps with memory, and an antidepressant, because back in December, she was crying a lot. Then the rehab doctor put her on Aricept, which is also for memory. The Namenda is a very new pill...that ironically was started right when we noticed she was starting to get even more fatigued. Right when we put those together was when I started questioning ALL of her medications and how they may be affecting her.

So anyways. I got totally off track. My mom and I were starting to touch on questioning the meds, then Thursday at work, while on my lunch break, my cell phone rang. It was George. He started right off the bat saying "I think we need to take Leslie off of some of her meds." I swear, I literally almost jumped out of my chair as I said, "I totally agree!" I spoke with a pharmacist who said there are no side effects to suddenly stopping the Namenda and Aricept. Now I know what you might be thinking...why stop something that is for memory? Well. Because how will we ever know if it's working? She definitely doesn't seem to be getting better. We'll never know without them if they make a difference, or if they are causing her so much fatigue, it's hindering her progress.

It has now been a few days since she's had them, and just today, Jay commented on how much better she seemed today. He had no idea we were stopping some meds.

Next up...the antidepressant. When she was started on it, we saw her crying spells decrease significantly. But then when she didn't shed a single tear at our Uncles funeral, I was immediately bothered by this. My sister used to cry if her fruit salad didn't look "right". For her to be so emotionless and expressionless at a sad event was NOT like her. George also informed us that at her last appointment, the doctor increased it! WHAT! She was doing okay...she didn't need a higher dose! I don't think she needs a dose, period, but that'll have to be worked toward.

The Sotalol and Coumadin are the only "must-haves." Whatever side effects those meds give her, we have no choice but to deal with. They are helping her live. The others? Does she REALLY need it? And the more you research a med, the more you learn. Like how one of them that she is on can cause heart disturbances. Another one can lower your magnesium (remember her magnesium being low in the ER last week? Hmmm?) and low magnesium affects the heart, too.

We just don't know. Obviously, NONE of this will be done without her doctors knowing, but I think after myself, my parents, and George all realized we felt so strongly about this, it was kind of like we all got a burst of energy to go forward with gusto again.

Team Leslie! I love you so, so much.

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.