Sunday, December 26, 2010

One step forward, two steps back. Two steps forward, one step back. Every day is the same, and every day is different.

I talked to Leslie on the phone today, around late afternoon time, and one of the first things she said to me was "I'm hungry!". I told her she probably had lots of leftovers from her Christmas dinner, and she should warm something up, all the while, knowing that every suggestion I was making, she was forgetting them probably almost immediately. When I hung up with her, this just wasn't sitting well with me. I called her back about an hour later, and much to my relief, they were getting ready to order some pizza, but I told her I would bring them by a Frosty later in the evening.

When I got to her house tonight around 9, she was wearing the same clothes she had worn all day yesterday. She also slept in them. When I asked her about that, she just kind of shrugged. I took her back into her bedroom and she put her pajamas on. We also laid out fresh, clean clothes for tomorrow. While I was doing this, I noticed she was crying. I asked her what was wrong, and she said "I just never have fun anymore." I asked her what she would like to do that was fun, and she suggested a "girls dinner" with my mom and I, but then she quickly added "but we do that all the time and I'm still not any better."

This part literally breaks my heart. It was torture leaving her house tonight with her crying. She is so desperate to get better. She does not accept that it will take time, and that it will be a slow process. How do you accept that, though, when everything changed to this with the blink of an eye. Why can't the reverse be the same? It's not fair. It's not fair to me, it's not fair to my parents, it's not fair to her husband, but most of all, it's not fair to her. We can all throw pity parties for ourselves because our lives are being changed against our consent (and trust me, there are parties galore!) but the bigger picture is OUR lives haven't changed at all. It's HER life that is upside down and backwards, and her life was going so amazingly well before this. She did absolutely nothing to trigger such an event.

It's not fair. And I don't know how to make things easier for her.

Saturday, December 25, 2010

This blog has gone in many different directions. From those first, frantic posts where I thought I was posting only for my own personal records, to when my list of readers grew and grew, because it was such a quick, easy way to get updates on sweet Leslie.

So now what? She's home and has a very long road ahead of her. I frequently get people saying to me "Don't stop writing!" or "You haven't posted anything in soooo long!" Well, it's not necessarily that there is nothing to post about. It's just now Leslie is a lot more aware of what is going on, so I want to respect her privacy on some level. I can tell you that she is really struggling with depression and a TOTAL lack of motivation, and this has been really hard on all of us. Leslie is usually the go-getter. She was always in the kitchen, making new dishes and hosting little parties. None of this happens anymore. Give her pajamas, a couch, and a warm blanket and she is golden.

Therapy still happens twice a week, but it's getting a little frustrating. She is officially done with physical and occupational therapy now. She just has speech, but we really don't see how it's benefiting her anymore. She is also going to start seeing a neuro counselor for her depression and lack of motivation. I think this will help her a lot.

So. Where do we go from here? I can't update Leslie's life day to day, because there isn't really much of a chance day to day. What direction should this blog go so that we can all stay connected without everyone getting bored?

My thought was, aside from Leslie's updates (and I promise they won't stop...they'll just be less frequent), to fill in the gaps, we can discuss wellness topics. I have had a slight heart scare myself just recently, so now I have to go in for a stress echo and I have to wear a Holter monitor for 24 hours. Deep down I know NOTHING is wrong. I have heart palpitations, but that is nothing serious. If it might give us a glimmer of an idea of what was going on with Leslie's heart, then, I will continue to go through with the testing.

Let's post about things we all are doing to promote wellness. Yearly physicals? Check-ups? Losing those last pesky pounds? Walking a mile? Getting educated on AED's and CPR training? Let's all set some goals. And as we chit-chat and talk about the changes we are making, it will lead us right up to the American Heart Walk which will be this Spring and we can all walk in honor of our Leslie... the one who brought us all together.

Friday, December 10, 2010

Tomorrow is the big day! Tomorrow is the day that we celebrate Leslie's life. That we let her know how much she means to all of us.

She is really struggling with depression right now. She desperately wants her life back to normal. She misses the classroom. She misses normalcy. Her biggest worry right now are finances.

My sister has worked her entire life. She started as a dishwasher at the 1897 Smokehouse when she was 14 years old. She did that for like, FOREVER. She loved that job and the people she worked with. They equally loved her. She got me a job there, too, when I was roughly the same age and I lasted, oh, maybe about 30 seconds?

She stayed there for quite a while. All through high school, if I remember correctly. When she graduated from high school in 1998, she attended Wayne State as a full time student. She then got a job at City Hall. In true Leslie style, she loved that job, too, and was very committed to it. She was a great employee. She eventually got her bachelor degree from Wayne state in education. Her major was in English, her minor in Spanish. Right before she graduated, she took a semester off to travel to Spain to study Spanish over there. She loved that trip and she has always vowed to go back.

As most people know nowadays, she didn't get her first real teaching job right off the bat. There weren't any positions available. She ended up working at an elementary school in Wyandotte, McKinley, as their media specialist (fancy name for librarian/computer teacher) and this, I believe, is where she found her passion. She loved working there, and she loved being in the library, which is why she didn't waste one second going back to school for her Master's in library science. She eventually got a job on the weekends at Henry Ford Community College working in their library. During the week, she worked at McKinley. When McKinley closed a few years ago, she got a position in Brownstown doing essentially the same thing, she just traveled to all of their elementary schools.

She LOVED her job. She loved the children, and she loved her coworkers. She was good at it. She never wanted children of her own, but she had such a way with them, I would frequently go to her for advice when it came to my kids.

The last position she had was teaching 7th grade Spanish. She was very nervous about it. I was very nervous for her. She was used to really little ones. I was afraid this age group would be difficult for her. When she started, she INSTANTLY fell in love with it. She had just posted on her own facebook page just before September 20 how much she was enjoying it.

She was so good at her job. She was such a loyal, faithful employee, no matter what position she had. She was always thankful to just have a job.

Every single day she talks about how much she misses it and how much she wants to go back. Every. single. day.

Someday, Les. For now, let's just focus on YOU.
Leslie had an appointment with her primary doctor. My mom, my 1 year old daughter, and 1 all went with her. We were quite the spectacle!

I had some concerns with Leslie's INR (a lab that measures how thin her blood is). Her blood needs to be thin due to the blood clots she had in her legs and lungs when she was in the hospital. Despite being on 10-15 mg of Coumadin per day, her blood remained thick. This made me SO nervous and didn't make sense. That is A LOT of should be working! After talking with her doctor, we realized that the multivitamin she is taking daily had enough vitamin K in it (antidote for Coumadin) that it was likely causing her blood to stay thick. We now have to go to a health food store to find a multivitamin without vitamin K in it. If we can't find that, she has to stop taking the vitamin altogether. Right now her INR is right around 1.9. Ideally her INR should be around 2.8-3, but the doctor said she would be totally fine if it got as high as 4. Blood that is too thin is better than blood that is too thick.

We also have to start challenging her more. She wants her to work on her Spanish for 30 minutes per day, and also start doing activities that challenge her. Some of you might read this and think, "Well no kidding!" because it seems so obvious to do that, but the thing is... Leslie has zero motivation. She doesn't want to do anything and is perfectly content just laying on a couch without any stimulation. If you ask her to do something or go somewhere, she will agree, but you know she is just doing it to be polite. It's hard to push her because you just want her to be comfortable. The doctor also wants her to get in about 30 minutes of exercise per day. I just wish the weather was nicer so she could take walks. The Coumadin makes her SO cold all the time, that to make her go for a walk outside, even if she was completely bundled up would be torture for her. I am going to call the high school on Monday because I know they allow Wyandotte residents to use their indoor track when school is not in session. That would be so good for her, and it's free!

Other than that, she is doing well! She is anxious to see everyone tomorrow at her benefit. See you there!

Thursday, December 9, 2010

All of my life, I have considered myself a Christian. As a child, I was involved in Sunday school and youth group. I have extremely fond memories of those days. As I got older, I continued to be an active member of my church, and I even taught Sunday school for preschoolers and served as a trustee. I thoroughly enjoyed going to church, and could not imagine my life without it.

When Ethan was born, I had him baptized. I took him to Sunday school. However, as he got older and our lives became busier, I slowly stopped attending. After all, I had to work every other weekend, so having a weekend "off" was a treat. Who wanted to get up early if they didn't have to? Slowly, I started realizing that I was no longer praying. I even started to question the whole idea of God, Jesus, and Heaven. It was a nice idea..but it was just that. An idea. And the sad part was... I was totally fine with my new way of thinking.

Several months ago, I was driving alone in my car, when I thought to myself "For me to become a believer in God again, something big is going to have to happen. Something life-changing. And then a miracle is going to have to happen. THEN maybe I will start believing that there is a power out there that is bigger than myself."

And then September 20 happened. My sister collapsed. I won't lie and say that I immediately turned to God. I didn't. I didn't even pray initially. It took me several weeks before I remembered what I had thought months before. And it literally took my breath away when I remembered.

Now I am certainly NOT saying that God saw my faith whithering away and used my sister as some sort of example. I don't believe that for one second. I am also not going to say that now that my faith has started to grow again, that my life is all rainbows and sunshine and everything all of a sudden makes sense. NONE of it makes sense and the unknown is haunting. I am a mess. Every morning I wake up thinking that today will be the day that I will start making better choices, and every night I go to bed trying to think of new ways to escape this reality. Often I wish that I could take Leslie's place. I deserve it. I'm not as good of a person as she is. She is a GOOD person. She has a heart of gold. I have always been more...what's the right word... mean? Judgmental? Both?

One of my biggest issues with Christianity are the people who act as though once you believe in God and start following His ways and reading the Bible, everything in life is so much easier. What the heck am I doing wrong, if this is the case? I struggle with how God can supposedly heal some people of such simple, insignificant ailments, yet my sister has to struggle every single day. I know how much MY heart hurts when I listen to her cry and ask, "Why me? What did I do to deserve this?" can this supposed "almighty, loving, and powerful" God sit back and not fix her?

I don't know. But I do know that the odds were VERY much against her. One horrifying incident has had such a ripple effect. People who hardly know her tear up when they hear her story. People are giving in such extremely generous ways, and I am absolutely CERTAIN that Heaven is literally bombarded with prayers for her on a daily basis.

I believe in God and I believe He was with her on September 20. I believe that God knows how much my heart is hurting, and I believe he knows how much her heart is hurting, too. I believe that her time on Earth will NOT be done any time soon, and that someday we will have a better understanding of why this happened. I do NOT believe this is the new Leslie, and I do believe that while it seems as though she has hit a plateau, she will continue to improve, a little at a time. And I also believe that I will have my days where I hit rock bottom, but I will also have my days where I will be full of hope.

She is a true miracle.

Monday, November 22, 2010

I am going through some really strange emotions lately. I can't even really pinpoint it. Not really depressed, not anxious, maybe just sad? I'm not sure.

Don't get me wrong. I feel so overwhelmingly blessed that Leslie is doing as well as she is. I am so proud of her and it is great that I can call her or see her whenever I want.

I guess reality is just starting to set in, and I am having a hard time accepting it. When this all happened, we had a lot of people contact us who have had loved ones experience brain injuries, and their stories were (are!) so, so encouraging. We are very thankful for those people, because a lot of the time, that was the only real hope we clung to...that other people have had similar things happen, and they were okay. However, the main theme we got out of these personal experiences were that even though their loved ones recovered, there was always a part that never really returned. There was always a reminder, even if it was small, that their brain was injured. This is where I think I am struggling.

I literally look back on September 20 and shudder. I think, in a sense, as ridiculous as it may sound, that I am traumatized by it. I have been having "flashbacks", if you will, of certain moments. How cold the ICU room was. All the times I would be asked to step out of her room and wandering around the empty hospital at night with nowhere to go. The way my heart would start to race as I'd get close to the hospital. The beeping machines. Getting so excited when we'd notice her swallow, because it was a sign that she was responding to SOMETHING.

People have asked if we have gone back to Main to give them a flyer, or even just visit her old nurses, and I don't think I can do that at this time.

She is doing all of the things we wanted her to do, but there are constant, daily reminders of what happened. She sleeps a lot and is always saying how tired she is. She has no motivation. We can make her go places and do things, but she never asks to do anything. She has no interests. Her husband decorated their house for Christmas, and Leslie just sat and watched. Normally, she would have helped.

Why? Why can't she just be BACK. Why did this happen to her? Will she ever go back to work and live a normal life? Will she ever call ME and ask if I want to go shopping or out to dinner or will I forever have to ask her? Will she ever show the initiative to get up, showered, and dressed or will we constantly have to tell HER when it's time to get moving?

I just. don't. accept it. I want to. I feel selfish that this isn't "good enough" for me. I try to feel thankful, and I am thankful, just not thankful enough, I guess.

A sister is a lifelong friend. Someone who will always be there, regardless. I think that all of my life, I have taken the fact that she is there for granted. I am regretting that I will likely never have those times back, and it's too late. I blew it.

If you have siblings, cherish them. I never thought anything like this would happen to Leslie, and we had no reason to believe it would. She was healthy. Twenty-four hours before she collapsed, we were getting ready to walk down the aisle as bridesmaids in our best friends wedding. Tell them you love them and spend time with them. Appreciate them and don't let silly things get in the way.

You only get one chance.

Saturday, November 20, 2010

Last Friday, my mom, sister, and I went back to "the scene." Well, not the EXACT scene, but close enough. As we drove down the long driveway in, my mind kept saying "this is the road that the ambulance drove in on, and out on, with my sister in there. As we passed by her room, I remember thinking "that's probably the chair she went unconscious in.

My God. It was real. It's so hard to imagine until you really see it. The day it happened, September 20, is like a haze. It was my absolute worst nightmare. I know I've said it before, but I wouldn't wish moments like that on ANYONE. When I start to think of that day, I will physically shake my head as if to shake those thoughts right out. I can't go there. I never want to go there again.

As my sister, Allison, and I got a little mini-tour with Rachel (who is just so sweet!) my mom stayed behind to talk to the principal. About things like the nice weather, the holidays, and oh, maybe how he played a HUGE ROLE in saving her daughter's life! How do you thank someone for doing something so amazing? For doing one small thing, he helped get Leslie where she is right now, which is home with her family.

To hear the details just literally rips my heart out. It is too disturbing for me to hear, and I just can't imagine what her coworkers and friends were thinking. To you people that played a roll, whether it be call for help, get her students out of the classroom and try to keep the calm, to try to keep YOURSELVES are hero's.

I still don't understand why this happened and I don't think I ever will. I don't plan on dwelling on it, either. I plan on dwelling on what I do know. That Leslie was in the very "best" place for this to happen. That the fast response of EMT got her heart beating again. The defibrillator picked up where the EMT workers left off, and it will continue to keep her heart in line, so to speak,and so far, so good.

My heart is so full to gratitude to all of you who have so eagerly given already. We love you!

Monday, November 15, 2010

This is why we are having a benefit for her.

Leslie Bishop's life was forever changed on September 20, 2010. She was in front of her 7th grade Spanish class, reviewing an assignment when she suddenly and unexpectedly slumped over and started breathing really heavy. The students reacted very fast and brought staff members back to the room. Someone called 911 while another assisted Leslie to the floor where it was discovered that she had no pulse and was not breathing. CPR was started, and when EMS arrived, she was intubated and her heart had to be shocked twice before it would start beating on it's own in a regular rhythm. She was immediately rushed to the emergency room, and from there, to Henry Ford Main in Detroit. While there, she spent 3 days on the ventilator. When the ventilator came out, she was battling pneumonia. As the pneumonia cleared, she was able to have a cardiac catheterization, along with a defibrillator placed to protect her from any future arrhythmias. She finally started to wake up about 5 days later, but she was very confused. She had trouble remembering who her immediate family was.

As time has gone on, she has steadily improved. After a month and a half at Henry Ford Main, she was sent to the Rehabilitation Institute of Michigan due to the anoxic brain injury she suffered when her heart stopped. She was in extensive rehab for physical, speech, and occupational therapy. She completed this for 2 weeks before she finally came home.

Physically, she is doing great! She has a lot of issues with memory, though, especially her short term memory. She has a long road ahead of her, with doctors appointments and therapy sessions.

Unfortunately for Leslie, the district she works for does not have a contract. Leslie will not be able to return to work for a while, but her paychecks have run out. She only received paychecks for as many sick days she had. Those ran out a long time ago. Her insurance? That ends 12 weeks from the initial incident on September 20. We may be running out of time from the insurance company's standpoint, but we certainly aren't running out of the desire to make sure Leslie gets the treatment she needs to she can get back into that classroom that she loved so much.

Please come help celebrate Leslie's health. December 11, 2010 at 5 PM at the Knights of Columbus in Wyandotte. There will be food, drinks, and music, along with some AWESOME raffles.

Sunday, November 14, 2010

Benefit updates!!

It is absolutely going to be December 11 at the Knights of Columbus. I believe the start time will be 4PM and it will be a spaghetti dinner. We have AWESOME items to raffle off, too!

If you would like to donate to the raffle, please contact me ASAP and let me know when I can come pick the item(s) up. Any time is good! My cell is (734) 301-1757 and you can call or text me. Or e-mail me at and we will make this work! The sooner, the better, so we can be really organized.

More details to follow!! Thank you to all those who have so graciously offered to donate!

Leslie up-date to come later after I sister-sit on Tuesday. She's doing great, though!

Tuesday, November 9, 2010

Circle talk. All day long. That's all we did. Circle talk.

Circle talk is what my family calls the repeating of questions Leslie does. Today was my first day "sister-sitting" with her. She got to my house around 7:30 and I dropped her off at her house at 3 for a doctors appointment. The whole day, she kept asking the same 5 questions. Think of a CD that keeps skipping and repeating the same thing over and over...this was Leslie.

Most of the time, I would just answer the question for her. A few times I would respond with "I don't know, you tell me" ...and this really made her nervous. I would make her think about it and she always answered her own question correctly, but she still wanted me to say it.

Around 1, she said she was really hungry and wanted to go out to lunch. When we got to the restaurant, she hardly ate a thing. When we left, as soon as we got out the door, she realized she left her purse at the table, so she went back in to get it. I let her go ahead, then I followed behind her. When I got inside, I saw that she was very far away from where our table actually was. I called her over to our table, and she didn't remember sitting there. The waitress happened to be at our table, and handed her her purse. Leslie apologized to the waitress for being confused, and said "I have a brain injury." This made me so sad for her.

Yesterday she had a good day, I thought. Granted, I wasn't with her nearly as long, but we met a friend of mine for lunch, and she did great. She ate good, carried on with conversation, and just seemed to be doing well. Today was totally different.

She doesn't sleep well. She goes to bed good, but then wakes up in the middle of the night and is restless. I do think that when she is tired, she is more confused, so I'm wondering if she was just really tired today. She has an appointment with her primary doctor today, so we'll see what she says.

Some family members have decided that they want to give a benefit dinner for Leslie! We decided on December 11, since my work schedule is pretty chaotic right now. More information will come. We are in the process of finding businesses that would be interested in donating. We are looking for items and gift cards that could be raffled off. If anyone can help with this, please let me know! We will have flyers out very soon.

Thursday, November 4, 2010

I remember the day, just over a month ago, when I drove up to my parents house and thought to myself, "What I would give to see my sister's car here, too." ....and today, my sister's car was there (she didn't drive, though, don't worry!)

I also remember all the times I thought, "I wish I could call my sister up and ask if she wants to meet for lunch/dinner." ...and tomorrow, we are going to lunch to celebrate her 30th birthday.

I remember the nights spent in the ICU, staring at her, thinking, "Please, just open your eyes. I miss your voice." ...and tonight, I not only heard her voice, but I heard her laugh, tell jokes, and reminisce.

I remember the night of September 20th, driving home without her, and thinking, "I can't go through the rest of my life without her. This was never supposed to happen." ...and tonight, I couldn't help but think, "We're getting a second chance."

My sister came home today. She is HOME. She will wear her pajamas instead of a hospital gown and no one will wake her up at midnight to check her blood pressure. She will wake up to see her husbands face and not someone she doesn't recognize. If she cries, it'll be US consoling her, face-to-face instead of on the phone. There was a time when we thought this day might never happen, and happened.

Make sure you tell your friends and family you love them. Be patient and notice the small things. Love your kids extra and remember that time goes by so fast, and you NEVER KNOW what might happen tomorrow. Nothing is guaranteed, and Leslie's story is proof of that.

Thank you, God, for Leslie.

Wednesday, November 3, 2010

This was taken Halloween night. In case you can't tell from looking at the picture, we were having a GREAT time. I love her so much!
Ugh, I hate when she calls me crying. It just breaks my heart.

I asked her why she was crying, and if she was lonely. She said it was because she can't remember anything, and everything is so confusing. She has really vivid dreams right now, and it confuses her. She doesn't know what was a dream, and what is reality.

We talked on the phone for about a half hour. By the time we hung up, she seemed okay. Something good that I noticed was that instead of her asking questions like "Am I married? Where do I live? Where did I work?" she was saying things like "So I am married to George, right? And I live on Oak street? I'm a middle school teacher, right?" She was still asking, but she pretty much already knew.

We are going on a month and a half since this all happened. It's amazing how it all can be on my mind almost constantly, but then every now and then, my mind slips up and I will do something silly like start to dial her cell phone number to see if she wants to meet for dinner. Times like those, I get very sad, but then I remind myself that those times will come back. I am so, so fortunate. I often remember the doctor saying that the chances of her surviving were less than 10%. How amazing is it that she is doing SO well with odds like that?

She will be home at some point tomorrow. I am off next week Monday-Wednesday and she will be here with me. If anyone wants to meet up or do anything, please don't hesitate to contact me. And as always, thank you so much for the continued prayers and positive thoughts. You are all SO appreciated.

Sunday, October 31, 2010

Mark today down as one of the best days of my entire life. Leslie got to come home for the day!!

She called my house around 9:30 this morning to say they were getting ready to leave. I hopped in my car and dashed over to her house to anxiously await her arrival.

When she pulled in, I watched through her bay window, camera in hand, and proudly watched her get out of the car all by herself, and walk inside. Naturally, the first thing SHE did was love on her puppy, Aggie, but that didn't stop me from snapping pictures (and unfortunately, my camera isn't working well, so most of the pictures are blurry).

She. looked fabulous.

She was just so happy. She didn't stop smiling.

She spent the morning and early afternoon at home, alone with her husband. Around 3:30 in the afternoon, they both came to my house, where we had pizza and pumpkin cake, and she got to watch my kids get ready for Halloween. She loved it. She got to joke around and play with Ethan, and see all of Allison's latest tricks and new words. At around 7:30, George took her back to her house to say goodbye to Aggie, and then he had to take her back to the rehabilitation center.

I will admit, I am glad I didn't have to go with George to take her back, because I can only imagine it was REALLY hard. As she was sitting at my house as the evening was coming to a close, she kept saying she didn't want to go back, that she just wanted to go home and sleep in her own bed. I don't think she has much of a concept of time, so even though we kept reminding her she would be home for good in just a few short days, she kept asking if she could just stay home.

Thursday she is scheduled to be discharged for the last time. She is already asking if we can go to Old Chicago soon for dinner, even though her appetite is practically nonexistent. She won't be spending much time alone, if at all, so I am looking forward to spending a ton of time with her soon. I am off 3 days during the week, so those days are a given that she will be with me. My mom is off 1 day a week, so we will just have to make plans for her one other day (George will be home on the weekend). She absolutely LOVES company. It never seems to get old for her.

I am just so proud of her. She has made such huge steps within the last month and a half. It is such an honor to be her sister and I will never take my time with her, or any of my loved ones, for that matter, for granted.

Tuesday, October 26, 2010

Just got home from spending some time with my sister. This time, Jay (my husband), went with me. George was already there, so it was just the 4 of us. We just sat around, chit-chatting like we always used to.

George went home shortly after, and took Jay with him so I could stay later. Jay had to get home to our kids to put them to bed. Leslie and I talked and giggled, and made up different stories about what the other patients on the floor were in rehab for. Scenarios that only sisters would come up with. It was fun. We laughed A LOT. We talked about the first thing we were going to do when she got out of there (go to the Melting Pot!!) and she shared with me what she does every day.

She is doing well, but she is VERY aware that something isn't right, and it makes her very sad. She cries often, and frequently asks if she can just go home. It broke my heart, because several times this evening while I was with her, she asked if I would just take her home with me. When I explained that I couldn't right now, she asked if I would stay there with her instead. Of course, I couldn't do that, either. She never cried tonight, but she asked a lot of questions.

She has practically no short term memory. If you ask her what she ate for dinner, she has no idea. If you ask her what she did in therapy, she'll say she never went, when in reality, she was in therapy for several hours. Parts of her long term memory are still a little foggy, but for the most part, she is doing amazingly well at remembering things from her past. Frequently, she will say "I had a dream that I (fill in the blank)" and usually it is something she actually did. It all must be so confusing for her.

I am very thankful that I documented all of this in this blog. I remember the first entry I wrote when this happened, I had no intention of sharing it with anyone. This happened on a Monday, and I remember thinking that she just might be home by the weekend. Looking back, I realize how silly and unrealistic that was, but I think I was just thinking with my heart and not my head. Thank you again for all of the support along this long, bumpy journey. There is no way my family could have traveled it alone.

Sunday, October 24, 2010

"It's overwhelming. It's just so overwhelming."

These are the words my sister tearfully said to me this morning when I talked to her on the phone. She knows she isn't right but she can't remember why. She is having a very hard time coping and she spends a lot of time crying now. It's sad, but I do believe it is a good sign that she knows she isn't her normal self and she isn't just accepting her current state of mind.

We encourage visitors. They are more strict with visitors at the rehab place, but we still encourage people to go see her. They also said that if you go see her and she is in therapy, to go see her in therapy. You don't have to sit in her room and wait for her. Visiting hours are 11-8:30.

People have asked about sending her things. She loves flowers. I would recommend waiting until she is home, though. There just isn't much room for things in her current room and she is so busy right now, she is hardly in there anyways. Pictures are also a good idea, or anything that may remind her of a certain memory. If you need her home address, just e-mail me or catch me on facebook and I will send it to you.

Please continue to pray for her. She is very scared and uncertain. When I talked to her today on the phone, she said "has anyone died?" She asked this because yesterday she asked our parents about our Uncle Frank, who passed away 7 years ago. My sister and I adored our Uncle Frank and his death was extremely traumatic for both of us. I believe she asked about him because she knew something had happened to him, she just didn't know what. When my parents told her he died 7 years ago, she was absolutely devastated.

That is all for now.

Friday, October 22, 2010

Leslie was discharged!!

She is now at the Rehabilitation Institute of Michigan located in the DMC in Detroit. It is considered a state of the art rehab facility for patients with brain injuries. We were worried that she wouldn't get accepted, or that the application process would take a long time, but she got in just fine.

As of right now, the plan is to keep her there for about 3 weeks, but depending on how she does, it could be sooner. She is actually doing VERY well right now. She is still forgetful and stumbles over a lot of words, but at times, her memory is spot on.

While I was visiting her today, she needed to use the bathroom, so an assistant and I got her in there. When I was standing with her at the sink as she was washing her hands, she took a look at herself in the mirror and said, "Woah!" This was one of the first times she has looked at herself in the mirror. Back before this, she had long, straight hair that was down to almost the middle of her back. Now her hair is SUPER short, and I think it surprised her! It was really cute.

Her strength is good, but she is still a little weak. The plan for her while she is in rehab is to help her get her strength back, along with helping her remember how to do basic activities of daily living... showering, brushing teeth, climbing stairs, etc. Once she is home, she will likely have a home care nurse come out to see her, along with her lovely nurse sister who will take excellent care of her (hehe!) I am home 3 days during the week, and my mom is home 1 day a week, so she won't be left alone for quite a while.

Anyhow, she is doing fabulous. I have nothing but complete faith that she will be back to her normal self in due time. I don't know when she'll be back in the classroom, but I know she loved teaching with all her heart, and she will get back there soon enough. Thank you so much for all of the support and love. I will continue to update on her progress!

Wednesday, October 20, 2010

Today is October 20. This means that one month ago today, September 20, was when this story first began.

The moment I remember most about that day isn't initially hearing the news, or seeing her for the first time on the ventilator in the ER. It was when my parents, George, and I were sitting in the ICU waiting room waiting to be called back to see her. None of us spoke. We just sat there. I remember George stared at the ceiling, and my dad stared at the floor. My mom and I just sat side by side without saying a word. The only real noise amongst the 4 of us was quiet crying.

That day, I didn't think she'd be on the ventilator more than 24 hours. I remember it being such a shock when we finally got called back to see her in the ICU room, still on the vent, and having seizures every 1-3 seconds. We desperately wanted to touch her and talk to her, and we were told to stand back. We wanted to be close and we were told to not even touch the bed. Everything was triggering seizures. We just stood around her bed watching her tremble. We left that night knowing nothing more than what our eyes were seeing. I remember walking out of the hospital that night, sobbing, and saying to my mom "I need her."

At times, I throw myself a phenomenal pity party. I pity myself because I have to find time out of my already busy schedule to drive all the way to Detroit. I pity myself because every time I go, I have to pay to park. I pity myself because I have to sacrifice a night of sleep. I get frustrated because she just doesn't remember everything. She still doesn't know she is in a hospital. I get frustrated because as I am trying to divert her hands away from pulling out her foley catheter, she is already starting to tug at the PICC line in her arm. Or just as I get her all settled in bed, she sits up straight and says "get the gun, Laura! Someone is breaking in, don't you hear them?" and I tell her for what seems like the billionth time that she is in the hospital and she is safe. I pity myself for this roller coaster of emotions we have all been on this past month. From desperation, to agony, to joy, to excitement. It's exhausting and I just want some normalcy.

But then I stop myself. My God, I have my sister. Mentally she might not be all there (yet!), but I can touch her, see her, and hear her laugh. I can watch her make progress every single day. I can brush her hair and scratch her back. I hear her tell me she loves me, or refer to me as "sister". I can watch her eyes light up when she sees my kids. I am SO. LUCKY. I am lucky because although my family went through the worst tragedy of our lives, we have learned a lesson. At least I know I have. I love deeper. I take the time for small things. I have STRONG faith and a heart full of hope. I have learned to be a better nurse to my patients, and when the opportunity is appropriate, I share with them my sisters story to maybe help them see that I do understand their stress of being in the hospital.

But the bottom line is...she is still here and she is going to be okay. What her future holds, I don't know. And frankly, I don't even care. We made it through the worst...the best is yet to come. And I can't wait!

Monday, October 18, 2010

Today was the big day!

Leslie has been on heparin for the blood clots in her lungs and legs for a good 2 weeks. They just turned it off last Saturday and she has been on Coumadin. Because of all the blood thinners, though, her INR (lab that measures how quickly your blood clots) was high. They knew this on Sunday and because she was scheduled to go to the operating room, they were trying to thicken up her blood. Rather than giving her a shot or IV of Vitamin K (the antidote to Coumadin), they were encouraging her to eat green vegetables (high in Vitamin K). For one, she has never been a big salad eater. And two, she hasn't had much of an appetite PERIOD since this whole ordeal started. So naturally, this morning, they got her down to the cath lab, and decided her blood was just too thin to safely put the defibrillator in, and sent her back to her room.

This was majorly disappointing for my family. Of course, we understood, and would never encourage a surgery if it wasn't safe, but gosh, we just want to get MOVING and get her on to rehab. They decided they would recheck her blood levels in the afternoon. Thankfully, everything was a go, and she safely came out of surgery around 7:30 PM this evening.

Now I have always thought of Leslie as just your average girl. She was quiet, and liked to blend in to the crowd. Since this incident, though, I have learned that my sister clearly craves a challenge, and has thrown these doctors for a dozen or so loops, and today was no exception! They got the defibrillator in, and when they gave it a test run, they learned it doesn't shock strong enough to shock her heart out of an arrhythmia. Say what? Yes, her heart needs an extra oomph. There are a few options for this to make it work. One involved implanting a wire deep into her. Due to her blood being so thin, this would be quite risky. The other involves putting her on a beta blocker (which she is already on one, so I'm not sure what the other one would be) and it would lessen the shock threshold. I don't really understand all of this, but it sounds scary to me. Leslie has to go all out on this one and have a super mega "can't touch me!" kind of heart, apparently. The doctors are going to go back in tomorrow and fiddle around with it some more. Can you fiddle around with a heart? I suppose so.

We also leaned a unique fact about her arrhythmia. Normally ventricular tachycardia has big pointy waves. Leslie's waves are short and stout. Kind of like a tea pot. We ask the doctors why, and they don't really know.

No one knows. My sweet sister, she's a lesson for the books! I love her and I know she can do this. We just have to figure out how to get her heart to cooperate.

So that's where we are now. I miss her terribly right now so I will be seeing her tomorrow.

Good night, y'all!

Sunday, October 17, 2010

Here is a FAQ session!

"Can you give us general directions on how to get to the hospital to see Leslie?"

Sure! I come from Wyandotte, so I take Southfield Rd. to 75 North. I take 75 until it becomes the Lodge (M-10) and take the Lodge North. Once you are on the Lodge, you will take exit 4C which is the Milwaukee/W. Grand Blvd exit. The street the hospital is on is West Grand Blvd. so drive up to there and turn left. Then turn left into the main entrance. If you turn right, you will be doing valet parking, which is $4. If you turn left, you will do self-park which is $2.50.

Regardless of where you park, go in the main entrance (there is also the West entrance, but we aren't using that one for these directions.) Go in the main entrance and turn left, right before the gift shop. You will walk down a hallway and when you get to a sign on the right announcing the chapel. If you go just past the sign, there will be a ramp right next to 3 steps. Go up those steps, turn left, and you will see elevators. Get on any of them, and take it to the 5th floor. Once you are on the 5th floor, you will see signs. To the left is the ICU area (where Leslie USED to be) and to the right is where she is now. Walk down the hall (it slopes down) and when you get to the main desk, turn left. Her room is 511B and it's about half way down and on the right side.

Hope that helps!

Any other questions? Shoot them at me. Anything. I can handle it and I want to know what others are wondering, too. Nothing is too personal.

Saturday, October 16, 2010

Last night was my turn to stay the night with Leslie. When I got there, she was up in a chair watching a movie with George. She looked awesome and very comfortable. George left shortly after so Leslie and I just sat there and chatted. If you didn't KNOW what was going on with her, you would have been totally fooled because our conversation was very natural and normal. She even teased me in a way she used to tease me before this happened, and she remembered the goofy name we gave her dog, Aggie's face when she got it all wet while playing in the hose. We laughed, held hands, and caught up on stuff. We sat on facebook together and I showed her some of the blog, including the pictures of her on the ventilator. She said it looked really scary and I assured her, it was horrific, but we are all so proud of how far she has come.

At around 9:30, she was ready for bed, and that was fine with me because I wasn't feeling so great so I wanted some rest, too. Little did I know, this was just the beginning of our very busy night! She somehow got it in her head that her and I were in a house, and someone was trying to break in. The noises she heard "outside" ie. the nurses and staff in the hallway, were the criminals and they were coming to hurt us. She kept asking me if I had a gun. Then she said I better call the police. Ironically, when she said that, we heard police sirens down on the street and she was so relieved that they were coming. She told me I better talk to them about what was happening. NOTHING I said relaxed her and she stayed paranoid for several hours.

Finally around 1, I got her to sleep, but this was also when they needed to do vital signs. Her blood pressure was quite low (74/48) so they rechecked it 4 more times. It never got higher than mid-80's but they must have been okay with that because they never came back. Needless to say, Leslie was wide awake again. This time she thought I was someone named Melanie. When I corrected her and said I was her sister, she said, "Huh! I didn't know I was in a sorority!" Not THAT kind of sister! But whatever. I didn't correct her and she then said "You really remind me of my little sister, Laura." Hehe :)

An hour or so after that, she needed her bed cleaned. Her skin is still very very raw. It bleeds and is very painful, so I try to keep her as clean and dry as possible. So while I was helping the staff make sure she was clean, I said to her "position your legs as if you were going to have a baby!" Baaaaaaaaaaaaaaaaaaaaad word choice. She had it in her head that she was now getting ready to deliver a baby and "ooooh I hope it's a girl!" We talked about her having a baby for at least an hour. When I finally got her settled in bed by rubbing her back and legs it was now almost 4 AM. No sleep for me, but I was doing okay.

She is taking a couple of blood pressure medicines (Toprol and Lisinopril). She does not have a history of high blood pressure but when she was on the vent it spiked up a bit and her heart rate was tachycardic. Right now they WANT her blood pressure as low as it is right now so we'll see how it goes.

I think once we get her to rehab, we will all learn how her life is going to be. We're ready for that next step. It's one step closer to getting her home where she belongs.

Thank you for the thoughts. Each and every one of you that read, I appreciate you so much. One day I will individually thank everyone, I promise. Just know that you have touched my family in such a deep way and we are eternally grateful to all of you.

Wednesday, October 13, 2010

Want to hear something really amazing? Leslie has been at Henry Ford Main for 23 days and has not been alone at all, with the exception of the very first night. Leslie is SO loved, and SO cared for, that people are always with her. I am so proud to be her sister.

She continues to do well. Her memory comes and goes. Lately, it seems to be coming more than going, though, which is awesome. She was supposed to have surgery for the defibrillator a few days ago, but then the cardiologists decided they wanted to do the MRI of her heart first ('bout time!) and the type of contrast they use for a heart MRI is something they don't have, so they had to wait a couple of days for it to come in. Tomorrow will definitely be the MRI, and there is a good chance they will also do surgery later in the day. If they don't do the defibrillator tomorrow, it will definitely be Friday.

My family is doing well. Tired, but strong. We have had so much support, it's incredible. I used to have such a hard time being optimistic about Leslie's future. Everything was so scary and uncertain. Don't get me wrong, things are still scary, and I still can't believe any of this ever happened, but someone said something to me that has really stuck with me. If God was going to take Leslie, He would have on September 20. Her chances of surviving the initial event were so slim. She was about 1 hour away from being alone that day, and had she been alone, she would be gone. Time was also on her side. EVERYONE responded so fast. It is a miracle, plain and simple, and I dare anyone to argue that.

I don't know why this happened. I struggle, because she is such a good person. She is smart, successful, kind, and incredibly giving. She loves her family and friends, and would do anything for any of us. Why her? Of all people. She was born with cerebral palsy, and I always thought THAT was unfair. Why give her more trouble? I don't think I will ever understand that, but I can say that my faith has grown so incredibly strong these past few weeks. I hate to think that she had to make sacrifices so other people could learn a lesson (like my faith growing) and I don't know if I will ever feel comfortable thinking that way, but I do think there was a reason this happened.

I love you, Les. I am so amazed by you.

Monday, October 11, 2010

Sweet Leslie! She is doing well! I encourage people to visit her. I know a lot of people wonder if they should or not...well the answer is yes! Go see her! She may not recognize you or remember you, but that just gives you the opportunity to hopefully make some connections in that brain of hers to help get her memory back quicker. Go, go, go!

Tomorrow is the day we have all been waiting for. She has the defibrillator surgery! It should be tomorrow in the afternoon. No specific time yet, but think of her during this time!

I visited with her for a few hours today. She was sweet. We held hands and she referred to me as her favorite little sister. Ahem. I'm her ONLY little sister. The entire staff on her unit knows her and loves her. It's sweet to hear them check in on her to see how she is progressing. She's the little celebrity patient!

We find if you see her later in the evening when she's tired, she makes the least amount of sense and she gets real rambly. Late morning, early afternoon is her best time.

After this surgery is done, they will probably monitor her for a day or two, then she will go to the Rehab Institute of Michigan in the DMC. This is apparently a state of the art facility for brain injury rehab. She's going to the best of the best. We are so excited for her. We are ready for the next step in her recovery to try to get her back to what she was.

Go, Leslie, Go! You have SO many people wishing you good thoughts!

Sunday, October 10, 2010

Leslie and I have always been quite different. We are only 18 months apart in age, but we have totally different interests. As little girls, I liked baby dolls, she liked Barbie dolls. I would play for hours by myself, she always wanted someone to play with her.

As kids, we started sharing more common interests, but not entirely. She got into the grungy look...flannel pants and baggy jeans, and listened to Nirvana. I was more into the preppy look and I liked Mariah Carey and Boys II Men. Her crowd of friends were more into music. My crowd of friends were more into sports and "team spirit". Her favorite things to do included going to concerts. My favorite thing to do was go to dance clubs.

We never really had a time where we didn't get along. Sure, we got into arguments, but nothing major. We never hit each other or disrespected each other. This was probably because we were so close in age. But don't let that small age gap fool you. Leslie still pulled some "big sister" stunts on me. Like when she used to tell me I made "the best peanut butter and jelly sandwich EVER!" Being the little sister, I was so proud of myself. So every night, when we'd settle in at midnight to watch Studs and Love Connection, Leslie would ask me to make one of my "famous" peanut butter and sandwiches for her. And me, feeling so proud that my sister thought so highly of me, would do it. It didn't take long for me to realize that is there really a WRONG way or a BAD way to make one? I was FOOLED.

But now before you go thinking "Awwww, poor Laura got tricked!"... I was actually the mean one. If you know Leslie well, you know she is very easy to trick. She trusts everyone! So like the one time we were eating candy together and I told her to save all of her starburst wrappers. I said it without even really thinking about it. Imagine my surprise when she comes up to me days later and has all these saved starburst wrappers and she is so excited to see what she can do with them. Shoot! She actually did it! So I had to think quick, because I had no idea what to tell her, and she seemed so excited, I didn't want to burst her bubble, so I told her that she now had to staple them all together and she'd have....a starburst blanket! Lame. ...but she did that, too.

My mom always stressed to us how important family is. How friends come and go, but your family is always there. I think that's why we were so supportive of each other. And I think that's why I sometimes have these breakdowns over this happening. I need her. More than ever, I need her in my life.

Friday, October 8, 2010

A lot of the time when I am visiting Leslie, we fantasize about what we are going to do when she gets to go home. We already have almost a weeks worth of restaurants we want to visit, including Olive Garden, Melting Pot, and Red Robin. And maybe a Mexican place, because we all know Leslie and her love of Mexican food.

We also have had the tradition for the past 7 years or so where my mom, sister, and I would go to Chicago every summer for 4 days. That tradition kind of fazed out when I had Ethan, so we'd take smaller, closer trips. One year, the trip was to Saugatuck. Now I won't get into what kind of city Saugatuck is known for being (BESIDES amazing), but we had an incident that we still laugh about, 3 years later. We had stopped at a Meijer because I forgot my camera card. Mom stayed in the car, because we brought Ethan along. Leslie and I ran in. We were just there for the camera card, so we were walking really fast. As we were walking, we went through the Junior girls section and there was a t-shirt. I read it out loud, without thinking a thing. Leslie read it after me, and that was when it hit us as to what it said. And we laughed. Not just laughed, but laughed until there was no sound coming out of our mouths, tears streaming down our faces, and we were all hunched over, unable to move. We laughed until we couldn't breath. We'd regain our composure, then remember what the shirt said, and start laughing all over again. It. was. hilarious. To us, anyways. And it is one of my very favorite memories with her. We always had fun, but moments like that made things extra special, and made me so glad to have her in my life.

It's always been just the two of us. There are no other siblings. We talk about how hard it will be when our parents get older, making decisions for them and whatnot. They already decided that I would be their medical advocate, and Leslie would just do everything else, especially anything money related because she was so good with money. It's stuff you hate to talk about, but you always have that one'll have each other to lean on.

On September 20, when I got that phone call, I was frantic. Panicked. I had no idea if my sister would even be alive when I got there. I cried harder than I have ever cried in my life. I wouldn't ask my worst enemy to go through what we went through that day. When she was laying there, unresponsive, on the vent, I remember thinking "Please, God, just come off that vent." Then two days later, when she came off the vent, I remember saying "Please, God, just wake up." ...and she did that, too. Then it was "Please, God, just talk to us." ...and she did. It just didn't make much sense. So here we are. One of the hardest questions people can ask me is "How is your sister doing?" It's such a general question, and I totally expect it, but I never know how to answer. If you want to know how my sister is right NOW versus what she was before September 20? Then she's doing terrible. She can hardly walk, she has trouble remembering, it's NOT the girl I've known all my life. But if you want to know how she is doing since September 20, then I would say she is doing incredible. She has done so much in the past 3 weeks, it's amazing and I am so proud of her.

She will get there. I believe in her. Oh, and the shirt said "Crazy but fun" and if you can't figure out why we laughed so hard, or even what Saugatuck is known for, I won't explain. But if you ask me or Leslie in person, you will likely see us crumble into a heap of giggles.
I aim to post at least daily, but at this point in the game, know that "no news is good news." If I don't update, it's just because there really isn't anything to update about.

It's looking like the defibrillator surgery will be early next week, either Monday or Tuesday. Then there is talk of discharging her! No, she won't be going home. She probably won't be going home for a long time. They are trying to decide the best rehab facility for her right now. They are trying to get her into The Rehab Institute of Michigan, because it specializes in brain injuries. We will find out next week where she is going.

She has started doing physical therapy the last few days. She is SUPER weak, but she does really well! She mostly just transfers from bed to chair with two people assisting her, but today we walked her (like 5 steps) to a wheelchair and I got to wash her hair in the sink. She was so funny. She hates having her hair messed with and was complaining up a storm. At one point, though, as I was standing over her washing her hair, she wrapped her arms around my waist and hugged me. It was so sweet. I didn't even mind having shampoo all over me.

She is still very forgetful. She gets very flustered with her words, too. She will mix words up, or even make up her own words. However, she is also very polite. If you ask her how she is, she will say "I'm fine, how are you?" She is also becoming extremely modest, but I think I would be, too, if I had spent the last 3 weeks being at everyone's mercy, and having anyone and everyone poking at me. She is SUPER uncomfortable with any male caregivers, and even when I was helping her get cleaned up, she was super paranoid that someone was going to come in.

It's funny the things she does remember. It comes in flashes...she will remember something, then go back to being forgetful just as fast. Like today I told her I signed up to be the mystery reader in Ethan's class. She asked me when I was doing it, and I told her November 5 and she responded with "That's my birthday!". While my mom and I were both there today, I was teasing and told Leslie that she has been in the hospital for almost 3 weeks now, and mom still won't drive herself there (our mom is notorious for being scared of expressways) and Leslie said "Gosh, mom! It's so easy! And if you get off at the wrong exit, you just get right back on and go the other way!"

That's about all for now!

Wednesday, October 6, 2010

I went up to the hospital this morning at 7:30. Leslie was sound asleep. Our cousin, Michelle, had spent the night with her and said she had a pretty good night. They watched one of Leslie's favorite movies, La Bamba, together, and Michelle was quizzing Leslie on what happened next. Leslie always knew.

When Leslie woke up around 9, she smiled really big at me and said, "Hi, Laura!" then said to her nurse, "That's my little sister, Laura!" This was the first time she said who I was without me asking her. I was very happy.

She was really sweet all morning. I fed her her breakfast of scrambled eggs and hash browns. I kept spilling pieces of food on her and she said something along the lines of "How long am I going to be embarrassing for?" I told her she wasn't embarrassing at all, and she said "I'm the girl who is embarrassing because I spill food all over myself." When she says stuff like that, it makes me believe that she realizes she says things wrong and she can't help it.

I had to leave around 11 because my mom was watching Allison and I would have to get Ethan from school. Before I left, I asked Leslie to take a picture with me. George was the photographer. Before we snapped the picture, I told Leslie to show me her smile. She kept giving me this really awkward, goofy smile. I would tell her, "No, smile natural!" and she would say through clenched teeth, "I AM smiling natural!" Finally, as we were cheek to cheek, she kissed me and George snapped the picture. It's probably one of my most favorite pictures ever. I posted it below.

Physical therapy worked with her and got her up in a chair. Apparently when they were walking her to the chair, she said "I feel like I haven't walked in weeks!" Silly girl. She seems to have lost a lot of her short term memory. Short term as in, the last 5 or so years. She knows me and my parents, but being married to George is really hazy, along with both of my kids. She also didn't know she had a house or what she did for a living. She also recognizes family members, like Aunts, Uncles, and cousins. We are working on getting her to feed herself. She takes her Dilantin (anti-seizure medication) in a syringe now, and the nurses make her give it to herself. She does that well. She reads amazingly well, but can't seem to remember how to write. She also is speaking Spanish, but just very basic phrases.

The cardiologist team met with her husband today. I really wanted to be there, but I was unable to, so I texted George a gazillion questions to ask. They WILL be inserting a defibrillator, but they need her PTT (lab that measures how thin her blood is) to be within a very narrow margin so as soon as that happens, the surgery will be a go. It'll likely be towards the end of this week or early next week. I asked about the PVCs and it turns out her heart wasn't doing that. It was going into ventricular tachycardia, which is much worse. The last time her heart did that was on October 3rd. It hasn't done it since. We were told it will "hurt like hell" when the defibrillator fires off. There is a chance it'll never fire, but if it does, it will hopefully save her life.

Once the defibrillator is in place, she will likely be discharged to a rehab facility to regain her strength and other ADLs (activities of daily living). She has such a long road ahead of her, but she is doing it!

Tuesday, October 5, 2010

Quick update:

Leslie had the cardiac cath today. They had to sedate her completely, so right now she is still sleeping. They did not see any blockages or any abnormal pathways in her heart. The doctor that did the cath said he believes the initial incident was caused by the pulmonary embolism, which caused her to stop breathing and her heart to stop. I can see this, but I have trouble believing it is the main cause, just because she went into the arrhythmia during the lumbar puncture, and she has continued to have PVCs (premature ventricular contractions, which is an irregular heart rhythm) throughout her entire hospital stay.

We obviously aren't done, though, we just aren't sure what the next step will be. As of right now, they are leaning more towards her NOT needing a defibrillator, but nothing is set in stone.

Monday, October 4, 2010

I didn't go to the hospital today because I worked 12 hours. When I got home, I called my mom's cell phone and she let Leslie talk to me on the phone. For the first few moments, it sounded like our regular old phone conversations, and it was so nice.

No big updates again today otherwise. My parents said she is very chatty and happy today, so that's always nice. I heard she had physical therapy today, but that might have been confused with speech therapy, because last I had heard (Saturday) they weren't ready to do much with her for fear of causing strain on her heart. Then again, she just may have had physical therapy, because we also learned Saturday that she would have to improve neurologically before she could have any heart procedures, and she is "penciled in" to have a cardiac cath tomorrow. Prayers that this goes okay. Part of me is really happy, because I am ready to get things moving so we can start moving her around more and maybe get her into rehab, but the other part of me is really scared, because she seems so fragile right now.

All in all, I think my family had a really good day today. Everyone seems optimistic, and that is always a good thing.

Sunday, October 3, 2010

No big updates today.

The cardiologist I saw yesterday didn't come back in (lucky for him). I told my mom that he totally caught me off guard yesterday, but if I should happen to see him again, I am ready and I know what to expect. I respect him as a doctor and I don't have any doubt that he knows what he's doing, but I also won't let him crush our hopes for Leslie. Period.

My mom talked to his partner last night and told her we wanted to have Leslie start seeing a speech therapist. For Leslie for obvious reasons, and also with us, so we can get some tips on how to help her. My mom also asked what the cardiologist meant by Leslie having to improve neurologically before she can have any procedures done, and they just meant that Leslie would have to be able to follow basic commands, such as lay flat and still after the cardiac cath. To me, it seems like these procedures are a priority right now, so I want to ask if they can sedate her after the cath is done so she complies. We'll see.

Neurologically, there isn't much of a change. For the most part, she is pretty confused. Every now and then she will remember something, though, and it always surprises us. Our best friend Kristen came to visit, and Leslie remembered the nickname Kristen has for her, and Kristen's parents came to visit and Leslie remembered her dad's name.

My kids saw her this weekend. I took Allison up on Saturday afternoon and Leslie was perked up the minute we came into the room. She referred to her as "princess", which is a name she called her before this happened. She was very sweet with her. Ethan saw her today. She didn't seem to remember him as clearly, but when we got there, Leslie was sleeping and she always seems to be more confused when she's tired. She did remember that Ethan calls her "Sessee". Ethan really enjoyed seeing her, and wants to go back really soon. He kept trying to help her remember things. I think next time we go, we will bring her some books and have Ethan read to her.

That's about all for now.

Saturday, October 2, 2010

I'll apologize from the very beginning...this post will be scattered and unorganized. I'm just going to unload my brain.

Saturday must be my designated "hard day", because I am feeling really sad again. How is it that you can miss someone so deeply, while being only inches away from them? I want her back in the worst way. It is a desperation I have never felt before.

I spent the night with her last night. It just works better for me to go in after my kids are in bed, so I got there around 10:30. When I got there, they were cleaning her up. George called me over and said for me to pay attention to how they were doing it, because he didn't feel they were doing a good job. For one, they took her foley catheter out, because the doctors apparently thought it was giving her a urinary tract infection. I don't doubt that, but she is nowhere near ready to tell us when she needs to use the bathroom, so now, after only a day or so of the catheter being out, her skin is completely raw. I stood at the head of her bed while two staff people were getting her situated. The look of pain and desperation in her eyes will likely forever haunt me. She doesn't really have the mental capacity right now to tell them to stop or that they were hurting her...instead, she just gets this really pitiful look on her face. I told them she needed to have another catheter to allow for her skin to heal, so the nurse got it ordered.

The rest of her night, she had her eyes closed, but she was extremely restless. Her hair is completely matted now, even though we tried super hard to keep that from happening, so I can only imagine how much her scalp itches and the hair is pulling. She also scratches at her face a lot and her legs are constantly on the move. I would rub her, talk to her, straighten her out, attempt to brush her hair, and just be right by her, but nothing helped. Around 4 or 5 AM, she finally fell into a deep sleep.

At 7:30, my mom got there, so we just sat on the empty bed next to her talking. At around 8, one of her primary doctors came in (not a specialist...just a general medical doctor) and was very quick. I hate feeling rushed. I asked if we could maybe start to try to transfer Leslie to a chair a few times a day to get her out of the bed. She said no, her heart was too unstable to put any type of exertion on her. That was sad for me.

The nurse and nursing assistant came in at around 8:30 to wash her up then I got to feed her breakfast. It was nice to be able to actively care for her. I have been longing to do SOMETHING for her ever since this happened, so I really get a sense of fulfillment from that.

At around 9:30, a cardiologist came in and really broke my spirit. The first thing he did was stare at the bed and my belongings, then say in a really surprised tone "you guys aren't staying the night, are you?" We told him we were, that she wasn't ready to be alone since she couldn't ask for help if she needed it.

Then he told us we would have some difficult decisions to make this coming week. We already knew they wanted to do an MRI of her heart and a cardiac cath, so the procedures weren't a surprise, but he implied she would have to make more improvements neurologically before we could do any of this. That didn't make any sense to me, because we have learned that it could take months to years before we have her back mentally, if at all. When I tried to get him to elaborate on what he meant, he said something along the lines of "the chances of her even surviving the initial incident was less than 10%. You realize that, right?" No, genius. I had no clue that if your heart stopped, there was a good chance of death. It was like he was saying we needed to just be thankful she was still with us, and stop asking for anything more.

He also said her heart has gone into some sporadic irregular rhythms, but clearly nothing that has hurt her. He said another option may be to put some type of vest on her that has an external defibrillator in it, and send her to rehab to recover more mentally, and then going through with the other procedures. And of course, he also had to remind us that she still could die before we do anything. And then he left! It was awful.

My mom and I talked a bit more and decided that before we made any big decisions, we wanted to sit down with the cardiologist and neurologist and get everyone on the same page. I just hope the doctors agree to this.

I feel like all along I have had a very realistic idea of what was going on. I think, if anything, I have been really pessimistic about all of this. I haven't let my hopes get too high about ANYTHING. Then this doctor comes in and knocks me down even further than I already have been, and it hurts.

Prayers are needed more than ever. We cannot lose her.

Thursday, September 30, 2010

So sorry for the very late update. I returned to work today and it was a 12 hour shift, so I never got a chance to get to a computer.

I didn't go visit Leslie today, which is the first day I have missed since this happened. It feels really weird to not go see her, but I know it's for the best.

I called and spoke with my mom about an hour ago and asked for an update so I could update you all. I know she passed her swallow evaluation, so now her diet is soft foods. We aren't allowed to bring her anything to eat right now just because they are strictly measuring her intake. She ate a great dinner, though!

They took her foley catheter out. It had been bothering her for a few days now, but I'm not so sure that was the best idea. She is nowhere near ready to walk herself to the bathroom. I say give her a break for maybe a day, then put it back in. Unfortunately for them, it's my turn to stay the night with her tomorrow, so I'm pretty sure that will be the case ;)

She sleeps very little now. Her restlessness has subsided a bit, which is good. She was a crazy lady for a few days! Her arms and legs were constantly moving. She is still very fidgety, but nothing like before.

She says some really funny, off the wall things. My mom put it best... 20% of what she says is correct. The other 80% we have no idea where she got it from. Like when she thought her husband's name was "Logical Erotical" and then she said her juice on her dinner tray tasted like moose and wet horse. When I asked her who I was yesterday, she said Willie Nelson. I have also been Sarah and Marcia. Willie Nelson is my personal fave, although it does nothing for my self esteem.

I know it's super funny to hear her say things like this. My family laughs all the time about it. It's even okay to laugh a little when she says it, but I also worry that she will think she's being made fun of, and we don't want that. It could cause her to regress and not talk. Like for instance, the nurses put her hair in two pigtails and when I walked in, I said "what did they do to your hair?" and she turned her head to the side and referred to me as "the girl who is making fun of her." That just about broke my heart. So it's fine to laugh, just be sensitive to the fact that she is trying and she is still very confused and disoriented.

That's about all for tonight. Tomorrow I will be up there around 10PM and stay the entire night, so I hope to get in some good, thorough updates then.

In the meantime, keep the prayers coming! If you compare the Leslie from today to the Leslie a week ago, the difference is profound. We are miles and miles from where we want, but the fact that she is here, talking, eating, breathing, smiling, laughing, I could go on and on and a miracle.

Wednesday, September 29, 2010

Oh, Leslie. Sweet, sweet Leslie. You are doing so amazingly well!

Now myself, and I totally realize this blog is not about me and my feelings, but I didn't have a great day. I turned my cell phone on silent while Ethan was at school and Allison took her morning nap and I just laid there...feeling quite numb. After a few hours, I turned my phone back on and got to my usual duties of returning texts and calls.

While I was detaching myself from the moment, I got a text message from George saying the swallow evaluation was not successful. It wasn't that Leslie couldn't swallow, though. It was that she was refusing to open her mouth! The stinker. Thankfully, they did not put the NG tube in and they are going to retry the swallow evaluation. While I was there, I got her to take all of her pills and two additional cups of applesauce just fine. Maybe someone familiar to her needs to do it.

No other medical issues were brought to our attention. When the clots in her lungs and leg improve, she will be getting a cardiac cath done, an MRI for her brain, and the defibrillator placed. She will be getting aggressive heparin therapy for a least a week and we are only on day 2 I believe.

We are getting there. Her family feels optimistic. She has a long way to go, though, especially neurologically. I don't know how long it is going to take to get "our Leslie" back, but I see a little bit of her in there every so often. I feel very optimistic right now and I am so excited for my night shift which will be Friday. Sleepover!!

I love you so much, Les. Look how many people you have brought together?

Tuesday, September 28, 2010

Leslie is having a great day!

She is very alert and awake. In fact, sleeping is not something she is doing much of at all anymore. She will doze off for 5-10 minutes at a time, but even when she is sleeping, she is quite restless. When she is awake, she looks all around. Her eyes are wide open. She still doesn't answer when we ask her who we are, but when we tell her who we are, she'll say "Oh, yeah!" When we say something funny to her, she will laugh, and she smiles nonstop. I told her that we are going to have a big birthday party for her for her 30th birthday party and she said "that would be awesome!" I asked her if I could give her a kiss, and she said yes, so I told her she needed to give me kissy lips, and she did. Then when I had to leave, she waved bye to me without any prompting. To me, this was huge.

Medically, she still has a ton going on. I got there when they were doing a dopplar on her legs and she has several blood clots in her right leg. Her left leg was fine. The treatment for the blood clots in her legs is heparin therapy, which she is already getting because of the clots in her lungs. Now we just have to pray that those clots don't move.

I never saw the neurologist (don't get me started...) so I don't know the results of the EEG or if they are going to do an MRI. The cardiologist came in and asked some questions. He said on the day she collapsed, her magnesium and potassium were low. Now I know electrolyte imbalances can cause arrhythmia's, but really? Why were they low, then? She hadn't been sick. She eats fine. He also said it could be a genetic defect, and in that cause, she'd need a defibrillator. I am all for that option. If my mind, it just makes sense. If her heart goes into another arrhythmia, it's there to shock it. If it doesn't, then, well, it's just there. Of course, there are always risks to her having one, but to me, the benefit (her life!) totally trumps the risks. They were supposed to come back in to talk to my family, but I had to get home so I will find out what they said later.

Tomorrow she will have a swallow evaluation to see if she can start drinking and eating instead of getting the tube feeding. While I was helping the assistant position her, she pulled her NG tube out. I swear, it was her mission to get that tube out and she seemed so relieved when it was out. I asked the nurse if we could just leave it out until the swallow evaluation, but the nurse said that she was using it to give Leslie her medications. She asked the doctor, and he said to try giving her her meds crushed up with applesauce. If she tolerated that, then great. If not, she would need a new NG tube. She will still have the swallow evaluation regardless. Let's pray she takes all of her medications good tonight! If she fails the swallow evaluation, she will need a PEG tube, which is a surgically placed tube that will go in her stomach to feed her. I'm not that worried about this. Of course, I want her to be able to eat on her own, but the PEG tube will be so much more comfortable for her than the NG tube.

As I always steps. But I can also say now that for the past 28 years (I'm her baby sister) I have far underestimated her strength. She is being so strong. I have never seen someone fight the way she is fighting.

Go, Leslie!

Monday, September 27, 2010

Just an FYI: I changed my blog to allow anonymous comments, so anyone can comment now. You don't need a blog. Now I just need to figure out how to get that logo out of the middle and we will be good to go!
So I skipped the arm and leg exercises with Leslie this morning. Why, you ask? Because she literally will. not. stop. moving. She is extremely restless. She pulled off her heart monitors twice and she ALMOST got her NG tube and IV out, but I caught her before she could, and her legs are everywhere except on the bed.

No doctors came in while I was there (is this not always the case?) but the nurse updated me a bit. She said Leslie is receiving aggressive heparin therapy (I'm not sure what makes it's running at a normal rate and they are following the same protocol we follow at Wyandotte, but whatever) because the pulmonologist is almost certain she has clots in her lungs even though the test wasn't definite. Of course, I never heard a word from the neurologist, the one doctor I want to talk to more than anyone. I noticed some swelling by her left ear that I made sure to point out to the nurse, but I really wanted to make sure the doctor saw.

She is still running an occasional low grade temperature, and her heart rate is still slightly elevated, so they took a urine sample and some blood cultures to see if their is an infection anywhere. There is also some blood in her urine that they are watching. The were doing another EEG when I left. They weren't certain they would be able to do it because she was so wiggly, but they were trying. It also sounds like the MRI will be happening. The nurse was trying to clarify the order with the neurologist because it wasn't clear (no big shocker there...).

Leslie was VERY awake while I was there. She dozed off a few times, but it never lasted more than a few minutes. She would also talk, but none of it made much sense. Some of the time she would ramble on and on in a mumbled, garbled mess. Other times it was clear as day. She said "Hi, mom" to me. I corrected her and said I was Laura. Then the nurse came in to straighten her up and she said "Hi, mom" to her, too. Think she wants her mom??

Whenever I asked her a question, she never answered, but she did repeat me sometimes. It was weird, because 99% of the time, she wouldn't answer appropriately or not respond at all, but then there was that 1% of the time where she WOULD answer the right way, or the way in which she would respond made me think that I triggered something familiar to her. Like, for instance, I said to her "I need you to get better so we can go to Olive Garden." Her response was a very excited "Olive Garden!" Olive Garden was always our place to go. When the nurses all came in to straighten her up, she said "This is so weird." Yes, Les, it is super weird.

Who knows what is going on inside that head of hers right now. It saddens me to think that this might be her new baseline. When I start thinking that way, though, I shake my head and tell myself to snap out of it. If you think about it, today she is more awake and talkative than yesterday. Yesterday she was a little more awake than the day before. We are making progress and I absolutely will NOT accept this is her baseline this soon in the game.

We take things day to day. Sometimes it's more like minute to minute. When I stay focused, I feel really determined. When I start to look to the future, I feel really overwhelmed. She has such a long road ahead of her, but she has a great support system and we will get her through this.

Sunday, September 26, 2010

These pictures were all before Wednesday, when she was still on the vent. She looks pretty much the same now, except no tube in her mouth. Tomorrow it is my mission to take one with her pretty green eyes open.

I was only with Leslie today for a few hours, so a lot of today's update is based on what other people saw. While I was there, she was quite alert. She didn't say any words, and she wasn't really tracking any of us with her eyes, but at least they were open.

I was hoping to catch some doctors while I was there, but unfortunately, none of them came in. Before I got there, she had gone down for a CT scan of her lungs to rule out a pulmonary embolism (blood clot in the lung). I was originally under the impression that they did this test because her oxygen saturation wasn't good (which was super discouraging because the previous days it had been excellent, but the nurse assured me that it was just another test to rule out another possibility of what MAY have caused the incident on Monday. During the test, however, Leslie wasn't real cooperative and didn't lay real still so the results were inconclusive. The pulmonologist decided to start a heparin drip on her (blood thinner that runs through her IV) just to be extra careful. He made this decision after consulting with her neurologist who, after seeing her brain CT scan determined that she does not have any bleeding on her brain.

The neurologist came in to see her, but this is after I had left. George said he was not going to do an MRI of her brain at this time, unless she starts to decline. She will have a repeat EEG tomorrow on her brain.

I'm not sure where we are as far as the cardiologist goes, but I do know he saw her today. This was before I got there.

From her families perspective, she is awake a lot more often today, and she has muttered a few words. She said "ok" when her nurses were positioning her and told her they were almost done. She said hi to one of her friends, and when George told her he'd scratch her back if she squeezed his hand, she did it. She also rolled over further when he started scratching.

The doctors said she is doing something called decorticate posturing. This is when a person with a brain injury brings both their hands in towards their chest, with their hands curled outward. She is doing this, but I'm not totally convinced it is decorticate posturing, because her left hand does this position often, before this even happened. I'm not sure if they are considering her cerebral palsy with this observation or not. Regardless, I don't feel too worried about it, mostly because I am just happy to see her moving her arms and hands now. She isn't in this position all the time.

Baby steps. Baby steps.

Saturday, September 25, 2010

I know people have been anxiously awaiting an update today and I apologize for being later than usual.

Unfortunately, there is no update. No progress is being made. In fact, she seems to be regressing. She's not talking. She moves, but just slightly. She opens her eyes, but we aren't sure she even sees us. There is no real reaction from her at all.

This is so terrifying. Words will never be able to describe how I feel right now. I feel selfish saying I want her back, because I should just be thankful she is still here. I can't help it, though. I want her back. This time last week, we were eating pizza at Buddy's. I wish I had known then how limited my time was. I wish I had appreciated it more.

I hope tomorrow brings better news. I hope a miracle happens, because right now, I feel that is our only hope.