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.

Friday, September 24, 2010

I'm doing the night shift again tonight. I've been here about an hour. We have a different nurse tonight and I like her. She is very patient with all of my questions and concerns. She actually found the resident we have been seeing and had him come talk to me and I spent a good 45 minutes or so with him. He asked me what my concerns were (my God, where do I start?) so I just said "Why is she so sleepy?" This is how he explained it to me:

First off, there is no real answer. It's frustrating, and it's probably the hardest part about all of this. We know nothing for sure. Her heart has some damage. We know that. But the hardest part, I think, for those that love her is her neurological status and her sleeping all the time. When this occurred, her heart stopped beating and she stopped breathing, so her brain was without oxygen. When your brain goes without oxygen, even for a few brief moments (and we aren't really sure how long it was for her), you lose functions. The good news, in all of this, that some of the most important functions, for instance, breathing on her own, having her pupils be reacting to light, and responding to pain, is huge. This is a VERY good thing. However, to say how long it will take her to be alert and not confused, is totally up in the air. Days, weeks, months...there is no answer. She will have times where she is alert and talking to us, and she will have times where she is sleeping a lot and very right now.

I think everyone naturally starts to feel super optimistic, especially when you consider what we knew when this all happened versus what we know now. She has made HUGE improvements. But at the same time, we are at the VERY beginning of a VERY long road. It's going to be hard and it's going to be super frustrating and sad. But we have to stay optimistic (totally easier said than done, I know) and set goals for her and help her reach them. The doctor said it is totally fine to try to wake her. It's also fine to move her around. We can't be scared of that.

I think a great idea, maybe, would be to bring pictures to her. Show her her friends and family and tell her who they are. We need to rebuild connections that were there, but aren't there right now. When we talk to her, remind her who she is, where she is, and why she's here. And also what we want from her. Make her think.

She has opened her eyes several times since I have been here, but she won't talk. What's the phrase... the lights are on, but nobody's home? That's her. I know she isn't recognizing me right now.

Tomorrow is going to be tough, and Sunday is going to be even worse. That is the last really awesome memory I have with her before this all happened. We will get through it, though.
I was with Leslie for about 5 hours today. There isn't too much of a change neurologically. She is still attempting to talk, but she is so weak, it's just above a whisper and very mumbled. She is also very confused. It's like she knows what she wants to say, but she says it wrong. For instance, I asked her who I was, and she said Marcia (who is her dog groomer). When I told her I wasn't Marcia, she smiled really big, as if to say "of course you aren't!" I asked her if she knew where she was, and she said "they are going to take care of me." I asked her if she knew why she was in the hospital, and she said "stroke". When I said, no, it was a seizure, she repeated the word seizure. She also says "oh, wow" and "really?" a lot. Like if I tell her a brief story about how she got here, or all the tubes that were going into her, she will respond with one of those phrases. At one point, she told me that I have a cat named Monica. When I started to laugh, she smiled really big. I told her that not only do I not have a cat named Monica, I don't even have a cat! She kept saying over and over that I do. Finally she responded with "liar". She coughed really big and I teasingly told her to cover her mouth. Her response? "I don't have a mouth."

The doctors are confident that she will get her memory back. I am, too. Of course, there are no guarantees, but she has gone through such a traumatic event, it doesn't surprise me that she is so disoriented. We will continue to re-orient her, and pray that she starts to remember.

Leslie will still be having an MRI or CT scan of her brain at some point. I am really pushing for an MRI. If they haven't done one by tomorrow, I am thinking I will insist on it. I just don't think it can hurt at this point. She also is going to be moved to a cardiac unit, since it is confirmed that she has some cardiac damage, and they are pretty certain her heart has an arrhythmia. We have no idea when she will be moved. It all depends on bed availability. There is a chance she will stay in the ICU for several more days.

As far as treatment goes right now, they aren't really sure. There is talk of attempting to medically induce her heart back into an arrhythmia, so they can see exactly what kind it is. Obviously, we have no idea what her heart was doing on Monday at the school, and when she started doing it during the lumbar puncture, the doctor didn't see it. If they can medically induce it, she will probably end up with a defibrillator placed. If they can't induce it, then she will probably be managed with drugs. Nothing is certain right now, though. They still don't have a clear picture of what is even going on.

As far as the pneumonia goes, it has improved greatly. She did spike a temperature today (100.something). Her nurse said her lungs sound a lot better. She was also taken off the venti-mask and placed on a regular nasal cannula (the kind that goes in the nose). Her vital signs are just about perfect. She is still getting breathing treatments every 4 hours.

When she is awake, it only lasts maybe 10 minutes. It wears her out super fast. We try to let her rest as much as possible and not wake her. When she does start to stir, we talk to her for as long as she allows. We noticed that she is starting to favor turning her head to the left, and her left side is quite rigid. Normally this would be a concern, but for those of you that don't know, Leslie has cerebral palsey on her left side, so her left side is always pretty rigid (for instance, when she walks, she doesn't swing her left arm, she keeps it tucked in at her side). We are going to keep moving her arms and legs around to keep them mobile and hopefully when she wakes up more, we can get some physical therapy for her.

Last night was a rough night for me. 90% of the time, I am very strong. I have been so busy juggling being with my sister and my two young kids. But when I break down, I break down hard. Last night I went to Leslie's house to bring her dog over for a little while. When I went to take Aggie back home, I saw Leslie's belongings on her kitchen table. Her work bag was there, and her lunch bag was in it. When I opened it, I found an apple and a spoon that she had used. It just made me so sad. Then I looked at her work notebook and saw her lesson plans. I also saw some doodles she had done where she wrote my name and my kids names. Then I saw the receipt from her bridesmaid dress, and that was where I lost it. I treasure the memories of that day so, so much. We had such an awesome time, and we were literally together from morning until night. I remember on the car ride home, I was helping her take the pins out of her hair. She was sitting in the front seat and I was in the back seat behind her taking out the pins. I joked and said I felt like a monkey, picking bugs out of her hair and we laughed.

I miss those times so much, but deep down, I feel that there are more to come, I just have to be patient.

Thursday, September 23, 2010

The boot on her left foot is a soft care boot. It keeps her the skin on her heels from breaking down by keeping it off the bed. The boot on her right foot is to prevent foot drop, which is when the muscles in the feet get really floppy from laying down so much. They alternate the boots every 4 hours.

Her hands. The red light is the pulse ox that measures how good her oxygen level is. She has the IV in her hand but it is never used. It's just back up in case they need it. Her hands are a little swollen. Her fingers are the one thing she really doesn't move yet on her own, but I have been moving them for her so they stay flexible.

The mess of lines on the side of Leslie's bed. You can see her tube feeding pump and her IV pumps, and the white screen in the back is the ventilator. If you look close, you will see the picture we have of Leslie and her dog, Aggie taped to the pole.

These pictures were about 24 hours before my sister collapsed and her heart failed her. How on earth does this happen??
Leslie is off the ventilator! I repeat...Leslie is off the ventilator!!

She was able to stay awake this morning and follow some very simple commands. And since she had also "passed" the ventilator weaning (putting her on the CPAP for a while) with flying colors, they decided to remove the tube. She is now on a venti mask, which still gives her a good dose of oxygen, but she is doing all the work on her own now. Also, because she is breathing all on her own, it is taking a LOT of effort. She is breathing about 30 breaths per minute and her oxygen saturation is averaging around 93%, but she is otherwise doing just fine.

She finally has a few official diagnoses. She definitely has pneumonia, but it is likely due to the whole intubation process...she probably got the pneumonia from aspirating stomach contents. She also tested positive for staph in her sputum (spit) but they are not concerned about that. She is on two new for the pneumonia and one for the staph.

She also has a TERRIBLE cough. She has a ton of secretions in her lungs and throat, so when she coughs, it is very gurgly and hoarse. It takes everything in her to cough, and most of the time, she isn't being very productive, but she is trying. Whenever we suspect that she coughed anything up, we immediately suction her mouth out.

She tries to talk. You can tell it takes a ton of effort for her to talk. She hardly has a voice and when she actually does get sound out, it is very hoarse. She will start out somewhat strong, and then her voice trails out. She talks very softly so you have to get really close to her. She is pretty disoriented, but we are able to make out some phrases. She seems to be particularly drawn to my voice, and I think it's because I have been talking to her so much since the second this happened. Whenever she hears me speak, she will turn towards me. I explained to her that she was at the hospital, and I told her she had a seizure in her classroom. Her response was "oh wow". I also mentioned some specific kids names that were involved in getting her help and she seemed receptive to their names. I asked her if she knew who I was, and I think she said "sister". It sounded like Sarah. She told me she loved me, and when I asked her to pucker her lips, she kissed me. She also reacted appropriately when I told her to stick her tongue out and open her eyes wide. She smiles a ton, and it is the sweetest smile ever.

The doctors also strongly believe that what happened to her was a cardiac issue. She likely went into some type of arrhythmia (they gave me a name, but I had never heard of it so I didn't retain any of it. I am going to have the nurse write it down for me.) They believe her heart started doing this, which caused it to stop, which caused the seizure. They believe this because when she was down for the lumbar puncture yesterday, her heart started doing it. I have no idea what the treatment will be for this. I have asked about a pacemaker before she got this diagnosis, and they said she likely wouldn't need one, but now that they know for sure, I will have to ask again. Right now she is on Lopresser, which is a pill. This will help with her slightly elevated blood pressure (130's/80) and her elevated heart rate (110-115). This was just started today.

She still has the NG tube in her nose. She is NPO (nothing by mouth) for at least 24 hours now that she is extubated. Tomorrow they will do a swallow evaluation to see how well she can swallow. Depending on how she does, she may be started on some fluids and foods by mouth. She will have to keep the NG tube until she successfully swallows, and right now it is being used for all of her medications.

She is doing so well today. We have a VERY long way to go, but again, she is taking baby steps in the right direction. I firmly believe the prayers are helping, so please don't stop. We still never leave her alone, unless the nurse asks us to step out. I am not taking the night shift tonight because I haven't had more than a few hours of sleep in the past 72 hours, but I think I might do it tomorrow night.

As always, I will continue to keep everyone updated.
I left Leslie around 5 AM when my parents came in. When I left, I said to her "let's show mom and dad your new trick" and then I called her name and she opened her eyes to look at me. She looked around a little bit, then closed them again.

At 8 AM I saw I had a missed call from my dad. When I called him back, he answered, crying, saying that Leslie had been awake for a good 15 minutes now. They told her what happened and she made a face like she was crying. They told her it was okay. The nurse saw, and teased her and said it was a good thing she was awake because she was just about to give her a pedicure (Leslie HATES her feet touched) and she smiled.

She is making baby steps, but they are steps in the right direction.

Wednesday, September 22, 2010

I am working the night shift tonight. I got here around 10, but Leslie had company, so I just sat to the side to let them visit. Around 11, she started to stir a little bit, so I did what I always do... got inches from her face and said "Leslie! Leslie! It's Laura!" ...only this time instead of no response, she turned towards my voice and opened her eyes a little bit! It was very encouraging. She is now back to sleep, but she has stirred a few more times since then, and I can usually get her to respond to my voice, even if it's just a slight raise of her eye brows, it makes me think it's her way of letting me know she hears me.
I have now been here about 2 hours, and I have done a full set of range of motion exercises on her (moved all her extremities around), which, might I add, I think she is getting a little bit stiff, so I need to mention it to her nurses. I don't see any harm in her having physical therapy while she's in bed to keep her muscles decent. I have also rubbed her back for her, which I am thinking she liked, just because she always has before.
That's about all for now!
Quick update because I am headed out to dinner with my family.

I spent all day with Leslie. No significant changes. She is still making small movements. She responds to pain sometimes...not all of the time, though. We can see her swallow occassionally and today she stretched both her legs out.

While I was talking to Leslie, I forced Leslie to open her eyes and I noticed that her pupils were not aligned. One eye was looking straight ahead, the other eye was drifting off to the right, just slightly. Nothing too drastic, but enough to notice. I mentioned it to the nurse and she said she would mention it to the neurologist. I also noticed that Leslie's pulse ox was only around 93%-95% and her respirations were around 28. I didn't like this. I assumed that since she was on the ventilator, she would be 100% and her respirations would be normal (12-20). I also brought this up to the nurses attention. It was explained to me that they changed the setting on her ventilator to the CPAP setting, so in other words, Leslie was breathing all on her own, the machine was just giving her some extra help. So it made sense that she was breathing a little fast and her oxygen saturation wasn't perfect... it was taking a lot out of her to do all that work. They said that is something they do for all patients on a ventilator so their lungs don't get lazy. Normally they do it for about 30 minutes, but because she was holding her own pretty well, they were leaving it be. They will definitely change it back to the normal setting at night, though, to give her a break.

The doctor came in and talked to me. He said as of right now, her prognosis is poor, but he said not to take that word to heart too much, because it changes day to day. He said she is clearly making SOME progress, because she is moving a bit now, and she still has reflexes and her pupils are reacting to light. There is damage to her heart. He said a portion of her apex is not functioning at all, and her ejection fraction is 45% where normally it would be 60%. He said theses are not issues we are addressing right now, but eventually down the line she would likely need a cardiac cath just to check for any coronary disease. They also aren't saying that any of these issues caused the seizure. It could have, but it also could be the result of the lack of oxygen when she was down.

She has some encephalopathy (I totally know I spelled that wrong...) meaning her brain is swollen. They said it is mild to moderate. The treatment for that is.... wait. He said it's caused by injury and the way an injury gets better is it heals. So we are waiting on her brain to heal.

Its minute by minute. Her labs are good and an MRI is likely going to happen soon. They did a repeat chest x-ray and they were taking her down to interventional radiology to FINALLY do the lumbar puncture.

My family is doing okay. We are tired and emotionally drained, but we are working together and supporting one another. We have an amazing extended family that has brought food, books, and a ton of love. People are also offering to stay with Leslie in shifts so we can go home. We don't want her alone right now. Leslie has pictures of my kids in her room, along with pictures of her beloved Aggie (her cockapoo).

We talk to her, remind her we are there, tell her what happened, and love on her constantly. I washed her hair today with her nurse, and put it into two braids. I also washed her face.

She is hanging in there.

Tuesday, September 21, 2010

First I want to say, that all the people that are writing on Facebook, all of the messages, texts, and voicemails...all of read and so appreciated. I try to respond to as much as I can, but sometimes I am either busy with the kids or at the hospital, but regardless of if I respond, words cannot ever adequately express just how thankful my family is for each and every one of you. Thank you from the bottom of our hearts.

Leslie is VERY loved by so many people. She is the most kind, loving, and generous person I know. She never sees bad in anyone, so it is no shock to my family that she is getting such a strong outpouring of love and support.

My mom and I went back up to the hospital tonight to visit her. She was not responding at all when we first got there, and that was really hard for me. It's crazy, because sometimes I feel really strong and I can talk about all of it without getting upset, and other times I am a sobbing mess.

When I saw her tonight, and saw that she wasn't moving at all or reacting to me holding her hand and stroking her arm, I just lost it. She is my sister. My only sister. The person that has always had my back. We text often, message often, and most nights we IM back and forth on facebook. I can't go through life without her and when I see her not responding, my hope starts to weaken.

By the time we left, around 10:30 PM, she was moving her mouth a little bit. She bites on the ventilator tube a bit. She didn't open her eyes or move any other part of her body, just her mouth.

There is nothing else to update about. She's not awake. She is still on the ventilator. She reacts to most painful stimuli, but that is about it.

I have strong belief in the power of touch, so when I am with her, I am touching her. I hold her hand, rub her arm, play with her hair...anything I can to let her know I am here. I talk to her constantly, letting her know we are there, that she is in the hospital, etc. and I kiss her. As a nurse, I am passionate about the caring aspect of my job, and it is no different with my sister. I want to rub lotion on her legs, brush her hair, clean her skin...but I really can't right now. There are tubes everywhere. The most I can do is wipe her chin with a towel.

I love her so so much. Life cannot go on without her. She is too good of a person.
We all left the hospital last night around 9. We learned we weren't allowed to sleep in the room, and there was no designated area to stay. Certain waiting rooms closed at various times, so it sounded like we would be shuffled around all night long. Since Leslie was so deeply sedated, we figured it would be best to just go home.

I promised everyone that I would call the hospital around 2 AM. George and I are the only people who can call to get information on her. It is our job to relay it to the rest of the family. At 2, I called and spoke to the midnight nurse. She said there were no significant changes. She had not had any more seizures. Her heart rate was no longer in the 120's-130' it was more like 110. They were slowly weaning her off the propofol, too, to see how she tolerated it. The nurse said that as soon as Leslie was awake and following commands, the would likely take her off the ventilator.

My parents and George got back to the hospital around 6. I couldn't be there until closer to noon. I had felt okay all morning. I had even repeated the story to several people over the phone without crying. When I got to the hospital at noon, the tears started. I just could not believe this was happening. I tried to talk to her and I was holding her hand. She wasn't responding to me at all, and that just shattered my heart. I wanted to know she was okay. I kept begging her to somehow let me know she was in there.

I stayed a good 5 hours. They did a repeat EEG so we all had to step out for about an hour. I left when they were getting ready to do a lumbar puncture. I am home now with my family, but I plan to go back up there and take the first shift of sitting at her bedside. George will be there, too. My parents will come up around 3AM and take over for us.

She started to slowly and gently move her head. She never opened her eyes, but the nurse said she moved both of her arms when they did a sternal rub on her (a sternal rub is where the nurse takes 2 knuckles and rubs them hard on a persons sternum). She also reacts when her nail bed is pressed. She doesn't react to blood draws or blood sugar finger sticks. Her pupils are both reactive and she has a gag reflex, so that is also good.

Right now she has the ventilator in her mouth, an NG tube and thermometer probe down her nose, an arterial line in her right wrist, and a peripheral IV in both arms. She also has a foley and cardiac monitors on her chest. She has large burn marks on her chest where they used the defibrillator on her at the school, and she has scabs on her temples and forehead from the EEGs. Her right hand is quite swollen, along with her feet, but nothing too major. She is wearing a boot on her right foot to prevent foot droop (where the muscles in the feet become really floppy from being in bed) and they will alternate feet every 4 hours. They bathe her twice a day, just to make sure her skin isn't breaking down, and after the lumbar puncture, they are starting her on tube feedings to give her some nutrition.

She is stable, but critical. Her vital signs are good and she appears very comfortable. She is getting Dilantin (an anti-seizure medication) every 8 hours, IV fluids to hydrate her, and antibiotics. They also have to give her insulin occasionally (she isn't diabetic, they are just watching her blood sugar very closely) and her electrolytes have been a little off, so she has received potassium, magnesium, and phosphorus.

I will update as I am able. I did take some pictures of her today, just so I can show her when she wakes up.

Monday, September 20, 2010

The only reason I am documenting this all, is because I know there will be a time, hopefully in the near future, where I will call Leslie up and say "you are never going to believe what happened!" ...and this is how I will remember the details.

Today I got a horrific phone call. My dad called while I was on my way to get Ethan from school. He was crying and he said "your sister had a seizure at work today and they had to do CPR." I stopped my car in the middle of the road and all I remember was loudly saying "What?? Wait, what?? WHO did this happen to?" then I hung up and the tears started. My initial reaction was "I have to get to my sister."

No one really knows at this point the background of what happened, but all we know is she had a seizure at school. When EMS came, she was not breathing and she had no pulse. CPR was performed and they were able to shock her heart back into a normal rhythm. She was rushed to Henry Ford ER in Brownstown where they ventilated her.

By the time I got to the ER, my parents and George were already there. No one had seen her yet, but the doctor had told us pretty much what we already knew. They eventually let us go back and see her, two at a time. She was completely unconscious. It was such a horrible sight. They made arrangements for her to go to Henry Ford Main in Detroit. George rode in the ambulance, and my parents and I all went home to regroup and go back up.

When we got to Main, George was in the waiting room so we sat with him. No one had seen her yet since she got there. The doctor called us back and was asking us some questions about her medical history. He said they aren't sure what is going on, so they are basically starting with blank slate and addressing every possibility of what is going on.

We got back to see her. She seemed very comfortable, but whenever she was touched or moved, she would have a seizure. It basically looked like she was shivering for a few seconds. It was happening very often, so we were advised not to touch her. I asked why she wasn't having these little seizures at the ER, and they said it was because she was getting IV seizure medication and they had turned it off to see how she would respond. This was how she was responding. She was back on it, but she was still having the seizures. She was also getting IV ativan as needed. At that point she was up to 10mg of Ativan and was still seizing.

The doctor came back in and was asking more questions. They said for a healthy 29 year old to be having this issue, with no previous history, and for her heart to have actually have stopped, they were baffled as to what was causing it. A neurologist is on board, along with a cardiologist. They said because her heart stopped, they are wondering if maybe a cardiac issue caused her to collapse, and the lack of oxygen from not breathing caused the seizure, but her EKG at this point is normal, other than showing tachycardia (fast heart rate). Her troponins (a lab that looks for cardiac damage) were slightly elevated, but nothing to be TOO alarmed about, but they were also taking that into consideration.

The fact that she is continually having seizures also doesn't make sense to the doctors. For her to have no history, and then all of a sudden have a massive seizure and continuous small seizures doesn't really make sense. They did a chest x-ray which was okay, and they did a head cat scan which was okay.

So right now, we have absolutely NO answers. She is very sedated and nonresponsive. She is still on the ventilator and as of right now, there is no plan to take her off. When we left tonight, she had stopped the smaller seizures, so I was holding her hand and rubbing her hair.

I can't believe this is happening. It is so terrifying. I keep reminding myself that had she been alone when this happened, she would be gone. That is sickening.

I don't know what the future will be like for her. No one knows right now. The idea of her not being here is just inconceivable, so we aren't even going there.

We are just asking for a lot of prayers, because as of right now, that is all the hope we've really got.