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.

When tragedy strikes, there are lots of instructions for the patient. Things such as physical, occupational, and speech therapy instructions. Discharge instructions on different medications, why you are taking them, and how often. Follow-up instructions so you can make sure you go to all your different appointments on the right days and times. Then there are just the generalized, day-to-day instructions, such as avoid green, leafy vegetables while you are taking your Coumadin.

But what about the family? What instructions do THEY get? How do they treat this patient, who basically walked in some sort of time machine one day and came out an entirely different person. Do we treat her different now or do we treat her the same? How should we feel? Is it okay to feel frustrated and annoyed sometimes, or should we feel ashamed of those feelings because we clearly are not appreciating what we've got. What the heck do we do and how the heck are we supposed to feel right now?

I know, speaking for myself, I feel a TON of grief. Solid, hard, knocks me to my knees grief. Grief that makes me want to push everyone away, including those that love me the most, just because it's too much work to share it with others. I have a TON of anger. Fierce, hateful anger. Every day, I wake up and I'm either so depressed and empty, it literally takes everything in me to get out (and stay out!) of bed every morning. I literally feel like I could sleep all day long. If I'm not feeling mopey, then I am crazy angry. Everyone bothers me and every situation is so annoying.

Is this NORMAL? What can I do for Leslie to help her? No one ever told us that part so we are all winging it, and we're all winging it in our own way. No one knows what the best way for her is.

My mom said something recently that really stuck with me. She said "What if, a year from now, we realize that there was one more thing... one more doctor or therapy...that we could have done for Leslie and we didn't. And now it's too late."

Ugh! That's so true! But no one has ever told us what our other options are. Again. We're winging it. We're winging my sisters life. Her future. We hope we are doing everything right, but in the meantime, we are all still trying to recover from this all. It all happened so suddenly and without warning, there was never a chance to regroup and start fresh. I know I don't speak for myself when I say I'm just TIRED. I'm tired of feeling and of thinking and worrying. I want my normal life back.

Please pardon me shifting the focus of my blog from Leslie to me. It's just a really big struggle right now.

Are we doing the right things for her? Have we done everything we can?

Many, many months ago, well before the incident of September 20, I gave Ethan, my 6 year old son, my digital camera, because I had upgraded to a new one. He loves to take pictures, and it's fun to see what he snaps photos of.

Normally his pictures are really random... toys, the dogs, the TV, or just random blurs as he runs through the house. Tonight, as I sat with him on his bed right before bedtime, I took the camera and started looking at the various photos. There are approximately 200 pictures on that camera. I was flip- flip- flipping through them, pretty fast, when I suddenly slowed down. He had snapped photos of Leslie when she was in the hospital. Days after being off the ventilator, but still very early in this whole journey.

There is no denying the photos are nowhere near professional...they are a little blurry and at strange, 6 year old boy-type angles, but to me, they take me back. There is a picture that perfectly captures all those days where Leslie had such a blank look in her eyes. Her actions were extremely child-like and impulsive. He got one photo where you can see me trying to shoo her hands away from pulling off her monitors (and she did that SO many times!) and another where she is staring blankly into space and I am rubbing her hands. We did a lot of rubbing in those early days. It was one of the very few things we could do to try to keep her calm.

You can see the worry and love in our faces, and the emptiness in her face. It takes me back to those days were we longed for something - anything- familiar from her, and got so little back. It takes me back to the night where Jay and I quietly left her room, quite late into the evening to head home to our kids, and my mom followed us, crying, asking if she would ever get better. It takes me back to the day I left the hospital with my parents, and my dad, crying, saying "I just want to hear her say "Hi, dad"... and all she does is mumble now".

They are terrible, beautiful, haunting, memorable pictures. Thank you, Ethan, for giving me that reminder of what we have now, and how far we have come.