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.