Wednesday, April 27, 2011

I suppose you could say it was just one of those moments where things hit too close to home.

As most of you know, I'm an RN.  I work on a medical floor but we also take hospice patients.  I knew I was getting a transfer from the Cardiac Care Unit.  What I didn't notice was her diagnosis:  Status post sudden cardiac arrest.  The same diagnosis my sister had.

Now normally when an ICU nurse calls report to a floor nurse, especially when it's a sad case like this one is, where the patient likely will not live through the night, the actual process of giving report is short and sweet.  Not this time, though!  This poor nurse!  I had so many questions for her!  The most common question being "...but why?"  Like Leslie, this woman had a normal day at home.  In the evening she got sick.  Her husband helped her to bed and found her an hour later not breathing and pulseless.  EMS called.  Intubated and rushed to ER.  Her down time was estimated to be about 40 minutes.  Leslie's was around 5-10. Big difference when we are talking oxygen to the brain. 

Thankfully, this couple had very specific, legal documents stating what their wishes were, and this was NOT her wish.  So therefore, she was extubated and sent to me.  It was really hard for me.  I kept just staring at her.  I examined her pupils as I often did Leslie's, except this person didn't make any attempt to track me like Leslie would.  When I moved her extremities, she didn't flinch.  She was COMPLETELY flaccid.  Leslie had more muscle tone.  Leslie could swallow.  This lady drooled excessively.  Leslie's skin was warm and pink.  This lady was pale, clammy, and mottled.

Sad, sad, sad.  In a sense it makes me so thankful that my sister's outcome wasn't like this poor woman.  Leslie has major deficits, but nothing we can't work with (and even laugh at, sometimes!).

But it doesn't stop that nagging question that I just can't shake:  WHY.  Why her?  She had a normal day with her husband before she collaped.  Why then?  Why with NO warning or while her children are on the other side of the country.

It's comforting to know that other people struggle with the same difficult questions, because sometimes grief can feel so lonely.  But there still needs to be more answers.

PLEASE.  I encourage you.  Walk with me and raise money for heart research.  Or just donate.  The website is http://miheartwalk.kintera.org/ and my team name is Heart Full of Hope.  I urge you.  Answers.  That's all we want.  We want to be able to say "So THAT'S what happened! ....and this is how we can try to prevent it from happening again."

Or you can mail me a check made out to American Heart Association.  I beg you.  There is no perk for me raising money other than I know it will go towards research to help things like what happened to my sister and this patient to loved ones of yours.  I beg you.  No amount is too small.

Laura Kowalski
605 St. John
Wyandotte, MI
48192

Saturday, April 23, 2011

Friday was a big day for Leslie.  She had a neurological exam that lasted several hours.  The whole point of it was to test her in several areas, then the neurologist analyzes it, and helps both her and her family understand where she is at.

We got to Novi where the office was by 8AM.  They called us back, and the psychologist wanted some history on her.  There were easy questions, such as her birthday and her social security number.  But then there were questions that never fail to make my heart sink.  Her education.  High school diploma?  Of course.  Bachelor degree from Wayne State?  Yup, she has that, too.  Masters degree?  Mmmhmm.  ARGH!  It just frustrates me so, so much.  She had SO MUCH going for her and it was taken away so brutally.  I hate being reminded.

After we did the questions, my mom and I were asked to leave (and head to 12 Oaks...score!) while Leslie was tested.  My mom and I are both quite protective of her, so we made sure the psychologist knew that my mom packed her some snacks, that she wouldn't think to eat them, so he needed to remind her, and that she does best when she is well rested, so towards the end, they may notice her struggle more.  He just nodded and smiled at us, and shooed us out the door.

By noon, we were back in the waiting room, waiting for her to finish.  The psychologist came out first, and said that her results would not be ready for several weeks.  I asked him if he could give us even a tiny bit of an idea as to how she did.   He said that her memory is clearly significantly impaired.  With an anoxic brain injury (where the entire brain is hurt, which is what she has) a patient pretty much plateaus at around 6 months and this will be their baseline.  Leslie is 7 months out.  He also said that while driving may be something she could handle, because her memory is so poor, one day she might handle driving like a champ, and the next time she might become totally disoriented and be unsafe.  This, naturally, was hard to hear.  And again, naturally, I won't accept it and I have so much faith that regardless of this "6 month" rule, her healing is NOT done and there will be more progress.

As he was talking to us, I could feel myself start to fight back tears and the anxiety set in.  But then something beautiful happened.  My sister walked out.  She was smiling and looked absolutely radiant.  She told us about the test and how they would try to challenge her and trick her.  She told us this with a lot of animation...something we don't see much of from her.  All I could do was pull her arm down next to me so she was sitting right by my side and give her a big hug and let her know just how proud I am of her.

The rest of the day was awesome.  We ate at Mongolian BBQ and shopped.  By the time we were done, she was very tired, but she did so, so well.

Baby steps as been the motto all along.  And baby steps we will continue to maintain.

Wednesday, April 20, 2011

I have always been very open about my issues with depression and anxiety.  As a child, I was always anxious, especially at night.  When Ethan was born, I became extremely overwhelmed with all the work and stress that comes with a newborn.  In your mind, you picture warm, snuggly babies that fill your heart with roses and sunshines and little puppy dogs.

Theeeeeeeeeen the baby comes home.  And doesn't sleep.  And screams in the car.  And pukes.  All. the. time.  And how the heck do you poop UP your back?  I remember when people would come over to visit and say "Oooooh, he is so precious!  I could just take him home with me!" ...and I'd think to myself "help yourself!  I'll pack his bag!"

Fortunately for me, I have always recognized these feelings weren't normal.  It took several months for me to recognize it with Ethan, and I have been blessed beyond measure with amazing doctors who never made me feel like a drama queen.

I have pretty consistently taken antidepressants since Ethan was 4 months old, with the exception of when I became pregnant with Allison.

I think anyone who suffers from depression and anxiety have moments where things are good, and moments where the bottom falls out.  The Leslie tragedy was by far the worst thing that has ever happened in my life, so it really doesn't surprise me that my hypothetical bottom fell out.  I didn't see it coming, but it didn't shock me when it did.

And again, I have an amazing doctor who is seeing me bi-weekly right now.  I take prescription Zoloft for the sadness and prescription Klonopin for when I get uber-stressed.  I'm not embarrassed.  I'm not ashamed.  If anyone wants to talk more about it, I am extremely open about it and I have been known to advise other's who seem to be struggling to get help.  It's there.  And these feelings are far more common than many think.

These past couple weeks have been tough, and I fully admit, I lost it yesterday.  I cried.  I trembled.  I threw up.  I loudly, openly GRIEVED.  I let all those emotions of immense sadness and anger out.  Sob?  You could say that.  Yell?  Yup.  I know some might read this and think "looney bin!  stat! ....but I share it because it's how I am coping.   You may be picturing me wandering the streets, muttering gibberish and yelling out craziness, and that would be inaccurate.  I appear normal.  I function normal (when around others).  I worked over 12 hours today and I had 6 very happy patients.  Patients that thanked me for listening to them.  Patients that told me I did a great job, and that even though they had to be in the hospital, they are so thankful I spent so much time with me.  I have two amazing, incredible, LOVED children that I literally dote on 24.7.  Pleasing them and seeing them smile is my main goal in life.  I have friends that love me no matter what.  I have a husband that has INCREDIBLY stood by me through all of this.  He doesn't understand it and he doesn't try to understand it, but he sees me try and he loves me anyways.

My days of "bottom dropping" (ooh, kinda sounds like some bar dance move, eh) likely aren't over.  My mood swings, crying spells, and anxiety will happen.  Again, and again, again.  But so will my moments where I literally raise my hands up to the Heavens and thank God for my amazing life.  For my amazing parents, husband, and children.  I am blessed beyond measure and I know that.

I'm struggling right now. Yes.  But I will be okay.  I have too many reasons (ahem, Ethan and Allison) to not PROMISE I will be okay.  I have a doctor who genuinely cares about my well-being.  She hands me the box of Kleenex when I cry and assures me she will ALWAYS listen to me.

I have received so many notes of support and love, and I can assure each and every one of you that I physcially felt the love you were sending me.  I have parents who send me notes of encouragment, from my dad who listened to me cry at 7 in the morning to my mom who said "I can leave work right this second to get to you.  Just say the word."  To a little baby Allie-girl who applauds when I walk into a room, to my sweet, sweet Ethan who twirls my hair around his finger and he says "I love you as big as a skyscraper, Momma."

Life IS good.  I know that.  But there is nothing wrong with getting a little help when the going gets tough.

Tuesday, April 19, 2011

Why is this happening again?

For the send time today, I am sobbing, trembling, and nauseous.

I have taken my anti-depressant, my anti-anxiety medicine, AND a sleeping pill and I can't sleep.

Why did this happen to Leslie?  What if she does die?  Who is to say that whatever mystery thing that happened to her heart that day won't happen again?  God took the parts that made her HER, who is to say he won't take her physical body, too?

Dr. Hudson told me no more babies.  I am thankful for the two I've got, but what if what happened to my mom with HER baby happens to me with my babies?

Why did Uncle Jim die?  Why didn't anyone work harder to save him?  I am a nurse and I deal with alcoholics all the time.  Did I ever go see him?  No.  Well, once when he was in the ICU.  I just kept assuming he'd get it together.  What person with a disease as strong as alcholism overcomes it alone?

Why the nightmares?  Jim coming back, me trying to help him, but by the time I get to him I remember he is dead.  Leslie at a funeral.  Me, all alone, with no kids. 

Why am I at rock bottom NOW?  Why is it ALL falling down NOW?  Why aren't there ANY answers?  Why do I have to live the rest of my life in fear.  Fear that something else awful will happen.  Fear that at any minute, someone else I love will go away.

Why is it so hard to just do what I need to do.  When I should be out of bed and functioning, it's like I'm glued to the bed and can hardly move.  When I should be resting, I am so anxious I literally can't stop trembling.

My body hurts, my heart hurts, my head hurts, nothing feels normal.  No one understands, including myself.  Why don't I grieve like a normal person?  Be sad, then pick up the pieces and move on.  Why the constant flashbacks?  Why do I keep her cut up sweater amongst my clothes?  I won't look at it, but I know it's there.  Why do I start to panic when I realize that the farther we get from September 20, the harder it's going to be to remember her before this happened?

I hate this.  I hate every bit of it and I don't think I will ever get over it.

Saturday, April 16, 2011

God works in mysterious ways.

Today I got the wind knocked out of me.  Not literally, of course, but I experienced a sense of hurt that I wouldn't wish on anyone.

There is no denying the love I have for my sister.  I clearly remember her first night in the ICU.  We went home that night, because she was so heavily sedated, we figured we would get some rest while we could because we had no idea what was to come.  That night, as I stood in the lobby of Henry Ford Wyandotte Hospital, I was crying.  I was crying because for me, living the rest of my life without my sister was terrifying.  Having a sibling, you just assume they will always be there.  They will always help you through the rough patches.  They will always be a shoulder to lean on and a friend to share inside jokes with.  A forever friend, if you will, and the fact that I was so close to losing mine was terrifying.

Right off the bat, when I started sharing her story, I got some resistance from people.  I anticipated it, though, and I respect it.  I know we can't all support every cause.  There are so many causes out there, it's just not financially realistic.  We can't help what causes our hearts lead us to. 

The more involved I got, the more resistance I got.  Again, I embraced it and respected it.  I never criticized or judged anyone who chose not to support. 

The last incident, though, was the one that brought me to my knees.  I shared my sisters story in a brief summary, along with a picture of her when she was critical and a picture of her when she was doing much better.  I won't go into details on it, because my blog will NEVER be about trashing someone(s), but I will say that if you want to hurt me, go for it.  You go through my family, though, and I lose that sense of respect.  I am FIERCELY protective and loyal to my family, especially my sister. 

So when this nonsense was brought to my attention, I responded the way most girls would.  I cried.  A lot.  I cried for hours.  I had red, splotchy, swollen eyes as I tried to cheerfully greet my patients with "Hello!  My name is Laura and I will be your nurse for the day."  I cried on the phone to my dad and I just know it ripped his heart out because he is equally protective of both his girls.  It was a long, rough morning, and I strongly wanted to throw in the towel and say ENOUGH!

But you know what?  I have some amazing coworkers.  I have some amazing friends.  People that care and support me.  To those people?  You will forever have a friend in me and I vow to not let you down.

Now here is the kicker.  I took all my heart paraphernalia home, at my own doing.  No one told me I had to.  I CHOSE to.  When I got home, feeling as if I got hit by a truck, I opened an envelope addressed to me and inside was a check for $250 for the American Heart Walk.  In the folder that help the money from the red dress pins and the cardboard cut out hearts, I had $127.00.  Then just from general online donations, I had $100.00.  This puts my total at $477.00 and this is just incredible!

So now I want to fund raise with a vengeance. I would like to raise $1000 by May 14.  Can I do it?  I'm not sure.  But I will spend every second trying.  If anyone has any fundraising ideas for me, please let me know ASAP.  If you would like to send a check, my address is Laura Kowalski, 605 St. John Wyandotte, MI.

I will be sending out notes with self addressed envelopes this week.

Every penny counts.  If you don't do it for Leslie, do if for your loved ones.  Nothing in life is guaranteed, so let's help make things as safe as possible.

I love you all.  I truly do.  Most of you I have never met, but just knowing you read and think about Leslie means the world to us.  SHE means the world to us.

Thursday, April 14, 2011

Ethan had his school conferences today. I can't believe he is almost done with first grade. I looked back recently in the livejournal I maintained, starting when I found out I was pregnant with him up until he was in preschool and it amazes me how much he has grown and changed.

The last post I made in this blog before Leslie got sick was in regards to Ethan's coping mechanisms. He has always been very sensitive to change and unpredictability. He struggled a lot in preschool with transitioning, and even had to have his own special chart to encourage him to try new things. Leslie getting sick was obviously extrememly traumatic for my family, but I was terrified of telling Ethan. Leslie (or Sessee as he has always called her) was his best buddy. He adored her and she equally adored him. He would often spend afternoons at her house, and they loved to go play mini-golf together on a hot summer day. Leslie never wanted kids, but my kids have always given her such a huge sense of fulfillment.

 Initially, when Leslie got sick, we didn't say a word to him. We didn't know what the outcome was, and I just wasn't emotionally ready for his innocent questions. It was amazing how I could leave the hospital sobbing, then come home and maintain a perfectly normal mood. One particular Saturday, I had a REALLY rough day. The doctor implied we needed to be thankful she even survived, and reminded us that she could still die. It was a HARD slap in the face. I cried the whole way home, and I couldn't stop. I cried all evening, and all night long. Hiding my feelings from Ethan was impossible.

For a child who struggles with coping skills, it was after explaining what was going on with Leslie that made me realize he is FAR more mature than I ever gave him credit for. Ethan became my rock. When I would cry, he'd sit quietly beside me. When we took him to visit Leslie at the hospital, he'd hop up next to her and try to trigger memories out of her. When she'd say something unintentionally funny, he would giggle a little bit, then help her remember things the correct way. He would frequently remind us that "everyone gets sick sometimes" and that we need to be patient and wait for her to get better. He wasn't scared of her. He did ask a few times if she was going to die, but he never worried that the mind frame she was in now may be permanent. He accepted it. He accepted her.

The Sessee he knows now is nothing like the Sessee he knew before. He no longer spends afternoons with her, unless someone else is there with him, and the mini-golf sessions likely won't happen as much, but he is okay with that. Children are amazing. They are unconditionally loving and accepting. The things we adults struggle with, kids don't. I will never underestimate Ethan's ability to love. His heart is pure and golden and I am certain Leslie knows that.

Tuesday, April 12, 2011

This blog has become sooooooooooooo slow! I apologize (I'm not even certain people read anymore!) but there just isn't much to update on day-to-day anymore. In a sense, I am thankful for that. I remember those days when things were so touch-and-go, and I wouldn't relive those moments for ANYTHING.

The Heart Walk is fast approaching and I will be there! It's Saturday, May 14 at Ford Field. Starts at 9AM. If you want to come walk with us, please let me know. Fundraising is optional (but obviously encouraged). If you DO plan to walk with us, please send me a quick e-mail letting me know, because I am going to look into getting Team Leslie t-shirts. Just send me a quick e-mail with your name so I have an idea of how many I'd have to order. My e-mail is LauraB2000@wyan.org.

If you need any help registering for the walk, I can guide you through the steps. The name of my team is Heart Full of Hope. It's going to be a GREAT day and it's for a GREAT cause! Again, please don't hesitate to contact me.

Leslie is doing pretty good. We cut a lot of her medication doses in half, and at first, we noticed an increase in her energy and motivation, but now she seems to be backsliding again. I know this discourages my mom a lot, but I kind of anticipated this. I know she will continue to have her good days and her bad days. One of Leslie's commonly used phrases (and she has a lot of these...) is "my appetite is back with a vengence!" and she implies that she is hungry ALL the time. Just from the limited time I am with her, though, I really don't think her appetite is all that extreme. There was a time months ago where she would sit all day and say "I'm hungry!", but taking the initiative to get up and get something to eat was not something she could/would do. She'd go an entire day without eating, but FEELING hungry the entire time. Now she'll say it, and actually get up and eat! Make meals? Well, no. But she is fully capable of getting herself a snack and I think this is a step in the right direction.

It is so easy to get very frustrated with her. She literally says the same things over and over again or she will do or say something that is so out of character for her. I don't want to say she is child-like or immature, but I will say she has NO filter on what is appropriate conversation pieces and what is best left to keep inside. It's annoying and you just want to snap back at her and say "Why did you say that???" ...but then I remind myself about what she went through and how far she has come. I think back to her principal at the middle school explaining how she slumped backwards in her chair and was breathing with a really gurgly, raspy sound. How they had to rip her clothes off her to do CPR. How she was essentially nonresponsive for 3 days. If she wants to speak her mind at any given moment, the SPEAK it, sister! Speak your mind and tell us what you need, because by God that means your mind is working.

 I will always continue to update this blog. Some days I try and the words just don't come, but I never forget about it and I always want to keep those that love her so much in the loop.