Wednesday, December 29, 2010

Looking For That Independence

She made it.  Lara is out of the hospital.  Friday was such an exciting day.  We got her home and settled in.  The next morning, being Christmas, was an early one.  Lara still has to be checked on every two hours through out the night to either help her move, or make sure she isn't laying funny on her left arm or leg.  Lara's current room is downstairs on the main floor of our house (Ben and Lacy's house, her sister).  So our 5 and 3 year old were up bright and early to check and see what Santa brought, which of course woke Lara .  Santa even had a stocking for Aunt Lara with her beloved sonicare and a few other things, but that sonicare is all that mattered to Lara.  It was a good morning.  We did our little family morning Christmas and then our big breakfast.  Lara loved being able to see her nieces and their reactions and share in those special moments.  Later that day we had the whole family over for food, more presents, games, and more food.  I thought the day may overwhelm her.  But she did great.

The next day we did our at home therapies of speech, OT and PT.  Then she went to her brothers place for his birthday.  She even had to go up a few stairs to get in.  She had her first appointment on Monday for her shunt.  Everything looks good.  Only has to go back for certain patterns of headaches for an adjustment.

Yesterday was out patient therapy evaluation day.  Lara will still be having all three therapies multiple times during the week.  Because of the therapists work schedules Lara will have to go in 5 days a week.

Today was my first day of gathering the posse by myself for some errands.  We made it!  Lara is doing great with her transfers and communication.  Still not 100% reliable.  She still will be impulsive without evaluating the full situation which could lead to some accidents.  She still has that left side neglect.  So working on seeing the whole picture to gather all of the information is still a work in progress.  Over all, physically, Lara is leaps and bounds better than she was even just a week ago.  It is her memory, emotional lability, just overall more of her mental game, that seems to still be moving slowly.  But hey...it's moving!

Looking for that independence is what these next few months are about.  We are starting small.  Well for you it would probably be ridiculously small.  Things like if you don't put the lid back onto the toothpaste tube, it gets hard and you can't squeeze your toothpaste.  (Which she has learned by experience) But instead of saying, "Lara put the lid back on the toothpaste" it is phrased, "Ok, is there anything else you need to do before we leave the bathroom?"  Or watching her fling her shirt around for five minutes before she asks for help and rather than giving her physical help, telling her a way that would be easier to get it on by herself.  Then watch her fling it some more (her attention span is the size of my 3 year olds pinkie finger) then she asks again for help and asking her if my instructions before were helpful.  Sometimes she gets it that she didn't try the suggestion, sometimes she still doesn't listen, sometimes she gets mad and frustrated...all depends on the moment.  That is more of the mental game I was talking about that seems to be moving along slower than the physical.  But again, moving!

Thursday, December 23, 2010

Ready or not here she comes!

Well, tonight is Lara's LAST night in the hospital.  I know my posts have gotten farther apart.  This past week I have been a little more hands on with her for her therapies and with the chaos of getting ready for her to come home plus the holiday season it has given little for extra time.

This past week Lara has done some amazing things.  She is going up and down stairs.  Of course this is with a four prong cane, a belt, and at least one other person.  She is walking farther and her form is getting better.  Again with the cane, belt, and another person.  They still want her primary mode of transportation to be by wheel chair and only the walking for therapy until she gets more stable and focused.  But she is moving her left leg on her own.  Lara got casted a couple days ago for a leg brace for that left side.  We have to ease her into wearing it literally minutes at a time so she doesn't get sores.

Her left arm is also improving.  From her fingers to her wrist there are some major improvements.  Her left shoulder is still not really working.  Supposedly, as the leg gets stronger and more stable, the arm is soon to follow.

She still hallucinates, and her memory isn't always great.  She has gotten more impulsive.  She tried to get out of bed on her own on Sunday night and fell.  It really crushed her ego she said.  It's pretty frustrating for her.  She wants that independence and can see it in sight, yet still needs help for now.  But soon, very soon.

It's been kind of sad the past few days saying good bye to her therapists and nurses.  Lara has built such a repertoire with all of them.  She even has some patient friends.  Their conversations are so cute.  One lady a couple days ago in the dinning hall asked Lara, "I'm a new patient.  I'm in room 312, what room are you in?" (as though they were going to visit each other or hang out).  Another lady who also has had a stroke and is struggling with her memory was in therapy across from Lara one day.  She was actually playing a memory game with her therapist (but not doing very well), when she saw Lara she said, "That's Lara.  She likes bacon.  She has bacon on her hamburgers."  We all were so proud of her!  There are definitely some great people at St Joe's that we will forever love!

Now we are entering a new phase of her recovery.  She will be having PT, OT, and speech, but now all out patient.  There will be more responsibility at home for her to do her exercises and progress on her own.  Thank you to each of you who have prayed, hugged, visited, and supported not just Lara, but her family too.  Don't get me wrong, this is by no means over.  I will still be updating.  (Hopefully more consistently than I have these past two weeks).  Lara still has a lot for you all to keep up on!

Tuesday, December 14, 2010

Wanted you to SEE it too!

What a great day Lara had today!  Talking with her physical therapist today she was saying that sometimes throughout the therapy there are some peaks and plateaus.  Last week Lara seemed to be on a plateau in terms of some of her physical progress.  Well this week looks like we are climbing a peak.  (Did you hear me tellin' that mountain to move yesterday?)  Today Lara went up and down stairs!  She learned how to use her strong right side and a rail to get herself up and then down.  Of course it took a long time, and with lots of rests (or distractions is what we would call them :) )and the help of two therapists, but she did it.  Lara also walked longer than she had been with her cane and with NO railing.  Holy guacamole!  All in one day.  And I'm not done there folks.  As though that wasn't enough, she made cookies in OT today.  Cracked the egg herself, one handed like the Incredible Hulk (and the therapist picked out some of the shells).  Read the directions and followed them.  Even got to share them.

We found out that Lara is slotted for another day pass for Sunday.  We had a tentative discharge date for next week that has been requested to be extended for two more days.  Not because she needs more care, but because these past two days she has made such good progress, they want to extend that growth as long as they can.  We will find out later this week the actual date.  She has a special wheelchair ordered for her and her brace for her left leg.  We have been prepping at home getting ready for her.  Bars, transfer seats, and a ramp.

Just wanted to let you all in on a quick update.  So you too could SEE "that mountain is moving from here to there."

Monday, December 13, 2010

Move Mountain Move

Oh my, has it really been a week since I last gave you an update?  Umm time flies when you're having fun? :)

Physically we are making some good progress.  Lara has used a cane to walk a few feet.  The therapist has to still help on that left side.  But even that left side is getting better.  We are looking for more strength and stability in that leg.  Her knee still wants to collapse and balance overall is still a big issue, but there is no doubt that there is a big improvement.  Lara can also transfer (move) herself from her bed to her wheelchair.  A little unnerving if you are not prepared for her to do it, and yes there have been a few over or under estimation of where the seat actually is.  She has gotten what the nurses call "impulsive".  She has done something once or over estimates her ability and then well...like two days ago she slid out of her bed.  So we are now kind of "on watch".

She has gotten better at doing somethings one handed like putting her shirt on and off.  Of course the goal is still to get more mobility out of that arm.  Her squeeze is stronger, but still not much extension in those fingers.

We are still trying to balance her medications.  Trying to help decrease some of these hallucinations.  Sometimes she is aware of her hallucinations, sometimes she's not.  When she is fully awake and alert she is pretty good mentally and emotionally.  She still has bouts of melt downs mixed with laughter and irritation.  Her speech therapist said sometimes that happens with brain injuries.  It's like a leaky faucet.  You or I can turn our faucet of emotion on or off, but Lara's has a leak.  Whether or not over time if there is more healing  of her faucet or not we will have to wait and see.  Some of her cognitive abilities have improved as well.  She has read a few sentences.  She has to be reminded to look ALL the way left.  Her left vision is still impaired.  She is also better at things like telling time.  Not perfect on these things, but better.

We are now allowed to take her down to some of the other floors with the cafe and little store, or down to the cafeteria.  One day she went down to lunch with Mom during peak lunch time.  She had ordered a sandwich and by the time Mom had wheeled her to a table she was crying.  "I need two hands to eat this sandwich."  Mom tried to reassure her she could cut it smaller for her.  But to no avail.  Lara was full on overwhelmed.  She didn't want people looking at her, still crying, but now hysterically.  So Mom took her upstairs and they ate their lunch in her room.  Since then we have gone down a few more times when it is not quite as busy, but still has people there just to start easing her in to more social situations.  She did good.  Even ate a little down there.

And the moment you have all been waiting for...Lara got a day pass!  (insert stadium crowd cheer here) Yesterday Lara was allowed to come home for a few hours.  We brought her home and hung out for the day with just the family.  It was good to see her in a home environment.  It also gave us a slight taste (ok more of just a flavor) of what it might be like when she does come home.  There will obviously be some big adjustments.

It's funny how small that last sentence is because the details between those words are so many and so BIG.  They seem to all run through my mind at one time and I look back that sentence and it is so small.  (It doesn't really carry the weight I guess).  "...if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move.  Nothing would be impossible."  I am faithful in God and His healing of Lara.  I am also faithful that God is not only healing Lara, but those of us around her.  Like I've said before, sometimes God is more concerned about our hearts than our physical body.  So..MOVE MOUNTAIN, MOVE!

Monday, December 6, 2010

A Day of Firsts (and one second)

Yesterday Lara had a lot of firsts.  She got to go outside for the first time in 35 days (yay).  We rolled her out and literally about 3 minutes later she said, "Ok, I'm ready to go back in."  I had to make her wait a minute so I could get a picture.  She also got to go down to the cafeteria for the first time.  She was craving a chocolate chip cookie.  She also went to the computer room to try and get on the computer.  But we couldn't figure out the login and password.

She spent some time playing go-fish with her nieces.  Lara doesn't really like to play games, never really has.  But she does things she doesn't want to for her nieces, and it is also some great therapy for Lara (though she might not realize that part).  Lara still has to conscientiously "scan" to the left because she can't see on her left side as well.  The therapist has showed her how to use her right hand to find the edge on the left of things, plates, books, cards, her tray so she can see things in their entirety and not starting in the middle and going to the right.

This past week she has also had her second shower.  What a special treat.  She said it makes her feel like a "real person".  Still no washing the hair, have to wait on those top stitches that seem to be taking longer than the back of her head or her stomach stitches.  She is also taking a few less pills.  I think we are down to only 10 at a time.  Not including her occasional vicodin, but that is less frequent as well.  Which is good because she gets so sleepy and starts to hallucinate with those.  Makes therapy kind of difficult.

Physically she is getting stronger.  She can squeeze her left hand, but still needs a little help on fully extending her fingers (like for a high five her fingers are curled).  She practiced walking with a cane some on Sunday.  She still needs help with that left side.  Her knee buckles and sometimes the therapist has to slide her left side forward.  They are trying to teach her how to align herself with the cane (or bar that is along the wall) so that she is balanced.  It is hard with her right side being so strong and her left so weak.  They call it pushers syndrome.  Basically her right side "over" pushes, but the left side is so weak, there is nothing to push back...so she falls.  Well they don't let her fall of course, but basically a lot of work on balance.  She is getting there.  It was nice to hear the therapist on Sunday also ask her how she was doing mentally, emotionally, and spiritually.

This current week is a big week.  Every Tuesday all of the doctors and therapists that work with Lara have a conference specifically about her, how she is doing and they reassess her goals.  They will also be contemplating a "day pass".  A day pass (usually on Sundays because there is no therapy on Sundays so she wouldn't miss any work), means she would get to be released from 10:30am to 7pm unless she was tired and needed to come back sooner.  Then we will learn how to transfer her in and out of the cars, her medication schedule, basically anything she might need for the day.  Her therapy would be more suited to getting her ready for out in the real world.  We are hoping she is well enough to get to do that this Sunday the 12th. 

Keep your prayers coming.  I have complete faith that God will heal Lara.  It may be a rough road physically, mentally, and emotionally for us all, but sometimes God is more about the hearts than He is about the body.

Tuesday, November 30, 2010

Lara's Fashion Fundraiser

What girl doesn't love fashion?

Maria Byrd is not only a great friend of Lara's but is also a local CAbi consultant who is having a fashion fundraiser this weekend!  Friday December 3 6:00 pm to 9:00 pm and Saturday December 4 10:00 am to 1:00 pm. 

Never heard of CAbi?  CAbi stands for Carol Anderson by Invitation.  It is a line of designer womens clothing (but not designer clothing prices) that has something for everyone.  The designer Carol Anderson used to sell her clothes in Nordstrom until 8 years ago when she started CAbi. Sizes are 0-16 (some run big and fit up to 2x) and XS-XL.  You can check it out and browse here.

http://www.mariabyrd.cabionline.com/


So how do these great clothes help Lara?

All of the proceeds that Maria would normally earn she is donating to the "Lara Chavez Trust" donation account that helps with the cost of Lara's overwhelming medical bills.

You can come by to try these clothes on!  Maria has a whole collection displayed waiting for you to see them in person and even try them on.  Just email me at omarathonmom@gmail.com and I can give you directions.

You DO NOT have to attend the event to order.  All you men out there, Christmas is coming and your lady needs to look great (and you know you hate going to the stores).  And ladies, what are you wearing to those Christmas Parties?  Ladies you could make it easy on him and just give him a wish list and let him choose.  Do you need help choosing that color for your lovely lady or not sure what size she is?  Are you wondering ladies if it is clingy to all the wrong places? 

Place orders and/or ask questions by calling or texting 360-551-9600.  Or you can email pinksparklycape@live.com

If you go to the website and just order it will NOT be included in this fundraiser.  All orders need to be in by Tuesday December 7th.

Yay For Hair Cuts and Showers!

Sunday was a good day for Lara.  Well it didn't necessarily start off that way.  She had refused some of her medication and refused to wear a boot she has to wear on her left foot (to keep it from becoming inverted and then the chances of walking are less).  By the time "the sisters" got there she seemed to be in better spirits.  We had a "little chat" about the medication and wearing the boot.  She seemed to understand, for that moment at least.  On the weekends there is only one day that is considered an easy day of therapy and then a day off.  Since she had therapy on Saturday, she had Sunday free.  James Harris from Sugardaddy's Salon came and gave Lara a hair cut.  He brought the salon to her.  So great, thank you Tim and James.  Lara's hair was so long, it was just one big knot half of the time.  She got a cute bob.  She loves it.

We did a couple strolls through the halls (well, we strolled, she rolled).  At one point she even said, "Come on guys let's go see what we can see."  That felt good.  It's those moments that we are having to cling to for now...the "Regular Lara".  Overall it was a good day.  We laughed we cried.  As good of a sister time you can have under the circumstances.

Monday not so much.  She did wear her boot (it is a BIG square, heavy, dark green with yellow-y cream fur, and did I mention heavy?) and take her medications so I guess the talk worked.  She was a bit cranky and frustrated.  (Ok...I know we all would be at some point right?)  She didn't get to finish her afternoon therapy because she was having such pain in her left leg she had to have an ultra sound to make sure there was no clotting.  Nope, no clotting.  One of the doctors explained that through this phase where she starts to regain some of her senses her sense of feeling is overwhelming.  Or as Lara would put it as Mom was putting her sock on, "Ow!  You're tearing off my toenail!"  So just a smidge sensitive.  She was having excruciating stomach pain at one point.  So much so that she was shaking.  She seemed better after a "Lara pill" (that is what she calls vicodin).  She was not interested in strolling the halls or much of anything else.  When I left in the evening, she seemed just overwhelmed with emotions.  Frustration, aggravation, depression, grief, sorrow.  That was at dinner time.  I think she got news that she may get to take a shower in the morning...I know that would lift her spirits.  First one in 29 days.  It's the simple things that seem so gigantic.  Yay for showers!  (You didn't know you were so blessed to be able to take one whenever you wanted did you?)  So like I've said before, we are in the emotional battle of this process.  I know she will overcome it.  ("Rocky" theme playing here.)

Saturday, November 27, 2010

God's not finished yet

It's been so busy and so much has happened.  Lara no longer has her pic line in.  That is basically a line in her vein in her arms for emergency iv's.  So no more venous drugs, or supplements!  Lara no longer has to do her breathing treatments regularly.  When it sounds like she may have some fluid in her lungs or just a little "phlegmy" they give her some of her breathing treatments that she can do on her own.  No more nebulizer.  Lara is making leaps and bounds in her therapy.  Not literal leaps...well not yet.  ;)

With Lara crying the day before about wanting to go to the Byrds for Thanksgiving, we all weren't sure about what to expect in terms of Lara's mood.  She seems to be, well like any of us would be in her situation.  Happy and joking like regular Lara one minute, then crying and wondering why her, the next.  It was a good day. We all got some laughs in.  She had a few moments of wanting to go home.  But I can't blame her.  It is hard for her to be there by herself.  She called my mom a couple times in the night and then in the morning wanting her to come in.

Yesterday Lara had an echo gram.  It's an ultra sound of the heart.  Her heart rate has been high for awhile and they just wanted to make sure there was nothing wrong.  Lara got pretty scared and called saying there was something wrong with her heart.  Once she understood what was happening she said several times, "I just need someone to come with me because I won't remember what to tell Dad, and he is going to ask me."  Got the results of that and everything is good.  They have put Lara on some medication to help her focus and help a little with staying awake and alert during the day.  Lara still struggles with some daily routine type things.  Like she will argue with you until you believe it that dinner time is breakfast.  She is pretty adamit about it.  Or that for three days straight they have only fed her grilled cheese, tomato soup, and fries.

She has been making some late night or early morning phone calls.  Sometimes not really making sense.  She did call me last night to tell me they took her pic line out.  There are no words to say what I had when I saw her picture lighting up my phone.  After we hung up she texted me.  A little punch to the stomach that it is just gibberish.  "Highighii mode hidellkl"  So I just wrote her back, "Thanks for texting me.  The girls were happy they got to see you today.  You really are doing great Lar.  Little steps at a time."  Not sure what she was wanting to tell me through the text, just hoping I was calming fears if there were any.  (They seem to grow at night).

The hallucinations are still there, a little less than before.  Again, when she is tired is when she seems to have more.  She seems to have more fear.  Today she cried to (and with) Lisa about her hair.  She found her bald spot (that is still growing) plus her two shaved spots which she has been worried over from the beginning.  Telling Lisa she has spent so long growing her hair out.  She finally let it out tearfully, "I don't want to look like a cancer patient."  Tomorrow the AMAZING James Harris (from Sugardaddy's Salon) is coming to see what magic he can work for her.  Emotionally Lara is on a very bumpy ride.

Physically she is making strides.  She had much more movement on her left side. So much so today in PT she could kick her leg up a little while seated.  She also walked again a little ways.  This time the therapist still helped on the left knee.  It wants to buckle.  But she was using her hip to get that left side going forward.  OT and ST has her working on things like, math, telling time, playing games (rules of taking turns, concepts of the games) some things that I would never think of.  Like "Lara, you are in a room with lots of seats all around you, it is dark, and you have popcorn, where are you?"  "Movie theater," Lara answers.

Considering where Lara was physically this time last week she has made such huge success.  She still has a very, very, long way to go.  She is not only in a daily physical fight.  Fighting to regain what she once had in her strength and abilities.  She is also in an emotional fight.  She questions daily why her, she trys to be a good person, it's not fair.  My heart cringes when I hear her ask those questions.  My prayer is one day she will see that through this experience God is using her.  God is not finished with her yet.

Wednesday, November 24, 2010

Go ahead and squeal and cry now.

We walked in and the first thing out of Lara's mouth is, "I walked today."  Yes again, the squeal.  We will address that in a second.

She had just come back from lunch, but instead of in her bed she was in her wheel chair.  One of the things they work on with her is just her endurance of being up and awake and not sleeping all day.  So while she is sitting there Lisa offers to brush her hair.  She had been growing it out for her wedding so it is pretty long.  Now remember she has two shaved spots on her head, one in the front on the left side where they had the drain, which is now stitches, and one in the back right where they put in her shunt.  That one has stitches too, but is also kinda like a big bouncy ball under her scalp...not that it bounces, but that's about the size.  Back to her hair.  They put her shunt in a week ago this past Tuesday.  Ever since that surgery when we brush her hair there was a lot coming out.  Some, we thought was from the shaving for the shunt, and we knew some would come out just from stress and trauma.  Yesterday Lara had mentioned cutting her hair.  It hurts her to brush it and it gets tangled very, very bad.  So she was thinking something kinda short, less to tangle.  Lara has been concerned about her hair as I have mentioned before and we keep reassuring her that James, (James Harris from Sugardaddy's Salon in downtown Port Orchard who is AMAZING) can work his magic with anything and not to worry.  Well today as Lisa is brushing her hair, she extracts the usual wad of hair and looks at me and points.  So I go to the back of Lara...bald.  She has a pretty big bald spot on the left side now (about the size of my fist).  We didn't tell Lara.  We didn't want her to worry more.  So, that is something you all could be praying for.  That for a moment in time Lara may not have hair, but that she doesn't let it crush her spirit for that moment.  And James...get to work!

We only got to see Lara do PT today.  Technically  we aren't supposed to get to go upsairs to the gym.  But we got to today, yay.  They got her up there and put some shoes that they have and this long brace in the back of the shoe to help Lara on her left ankle so she doesn't roll it.  Her therapist takes her to the hallway, parks her by the wall with a railing and tells her she is gonna show us how she walked this morning.  I was so excited.  The therapist helps Lara stand up and Lara is hanging on to the railing.  Another therapist takes away her chair so she can't try to sit down.  The therapist takes her left leg and moves it forward for her, Lara steps with her right.  The therapist moves her left leg again, and Lara steps again with her right.  It was awesome to see.  Don't get me wrong.  Today, Lara could not walk by herself.  Yes, someone has to move her left side for her because she still can't move it.  But just to see her up and out of that chair was like...well there is nothing I can really compare it too.  I wanted to cry, squeal, yell how awesome she was, hug her, and then cry again.  Lara in two sessions (she needs a break) walked almost the whole hallway.  Between the morning session and the afternoon session of PT Lara walked about 45 feet.  I KNOW, RIGHT?  (you can squeal, cry and yell how awesome she is now).  The last go round of walking she was tired.  She doesn't always have the confidence she can do it.  Even her right side is unstable, just from laying in bed for 3 weeks.  So she gets scared she is going to fall.  I am just proud that when she thought she couldn't do anymore, she pushed on for about 7 more steps...that's when the growing happens.

Then Lara got back in her chair and practiced wheeling herself down the hall with just her right foot and right hand.  She did pretty well...kinda fast even.  At one point she did start crying.  Saying she wanted to get out of there and she wanted to go to thanksgiving at the Byrd's.  Finally we had to tell her we would talk about that down stairs and now is time for PT.  By the time we did get back down stairs and back in her room she was better emotionally.

On a way more personal note and I may get in trouble for this... but Lara used the actual toilet today too.   With the help of two nurses she got in there, and they even closed the door some and just stood outside it until she was done.  I know, some are thinking...why in the world would you share something like that.  Here's why...she can balance enough to be left alone!  (In basically a caged in toilet with all the bars they have around it.)  Besides that, wouldn't you want a little celebration for your first time to sit on a toilet in 24 days?

Tuesday, November 23, 2010

Getting back to center

Wow, what a difference a day makes.  Not knowing when or even if (due to weather conditions) any of us would be able to make it into see Lara today, it was difficult leaving her last night.  Especially now that she is getting to be more understanding of her situation and her sometimes emotional struggle with it made it even harder.

Today was a good day overall.  It is so hard to get details in because so much happens in one day.  Yesterday Lara had worked with PT on trying to sit balanced.  Because her brain is not connected with her left side, basically when they sit her up, she just falls either back or to her left.  Mom described it best as she is like moving oatmeal.  The therapist had her in a seated position on the edge of the bed.  The therapist is in front of her, I mean...almost on her, seated in a chair.  I am standing behind her just in case I need to catch her.  Lara has basically zero strength on her left side.  So her right side overcompensates to find her center, and ends up pushing to the left.  Well her left side can't push back so she falls over.  (I hope that makes since).  So now that Lara is positioned, the therapist has her prop herself with her right hand on the bed...so kind of leaning forward and to the right.  Lara then has to go down on to her forearm and push herself up to center, without falling.  A kind of push up of sorts.  Sorry, but on those cushy beds, I think a few of us with weak abs would have a hard time doing that.  You know the crazy thing was as she was doing it, it got easier and easier for her to find her "center".  Then she was sitting.  She looked like a rolled sack of potatoes, but sitting none the less!  They worked a little while longer on some other balancing and don't get me wrong, she would lean and the therapist would tell her come back, you're leaning, but still classifies as sitting.  She would pull herself back.  Just getting her to recognize and find her balance on an unbalanced surface was a big deal.

Due to the road conditions we didn't get there until lunch time.  Peeked in her room, no Lara.  So we went down to the dinning hall.  Can I tell you Lisa and I were FAR away.  I mean, the other side of the room and still in the hallway just through the door.  I waved.  It's like peeking in on your little child on their first day of school.  We had "perma-grin" you know when you smile so big and hard it hurts...and you can't stop. We waved and she saw us.  I don't know exaclty how far, but we were "I wasn't expecting her to be able to see us" far.   We are not supposed to go into the dinning hall while the patients are eating as visitors can be a distraction.  So...I go in. :)  I lean down by her shoulder, "Hey just wanted to tell you we're here and we will be waiting for you in your room until after lunch."  Her face scrunches up, "Why, you can stay here."  "Well, we aren't supposed to be in here.  We don't want to distract you from focusing."  Totally said for the nurses benefit that was standing right by me.  "Oh, guess what I did today."  "What?"  "I stood up.  And it was the scariest thing I've ever done in my life."  What I wanted to do was squeal like a little school girl shaking my hands in the air with some jumping.  But I refrained.  "Lara, that is so awesome.  I'm so proud of you."  Gave her a little kiss on the forehead and told her we would be waiting in her room.  Then walked over to Lisa to squeal with her.  WOW.

We had the chance to see two of her sessions of therapy today.  Her physical therapist said that because we weren't too distracting we could watch.  Yay for good behavior!  At one point she wheeled Lara out into the hallway.  There are wide hand rails along all the walls.  Using her right hand on the rail, a belt around her waist, and a quick pep talk from her therapist, the therapist then hoists her up.  Lara stands for a little over 15 seconds.  The therapist does have to help stabilize her legs.  They are wobbley and weak, and she has to help her lock her left knee.  But she did it.  When Lara is all said and done with all of this in a year or two, maybe she will let me share the video.  Lara then sat down and did it a second time...even longer.  Wiped out!  They wheeled her up to the gym upstairs.  She met with the occupational therapist.  They played connect four, worked on some vision field, (remember she can't see out of her left quadrant), then she sat on a bench and had to use her right hand to unscrew these screws and put them in a dish (more balancing while sitting).  She was so tired.

It was a fun day.  We got to laugh with her, she had a moment with Justin, she worked so hard she was tired, and she earned it.  It's nice to have these good days, to balance out the not so good days.  Brings US back to our center.

If God is for us, who can ever be against us?

Sorry about not posting yesterday.  Our power went out and so no internet.

This new phase as I have said before means alot more work, and more independence for Lara.  She is having to learn to do things for herself without help.  Not just how to do it, but that she can.  Washing your armpit one handed is kinda tricky.  I know you're wondering how now that I have planted that visual.  Lara has learned to take the wet wash cloth and fling out, catch it with her armpit, and drag it through.  Who would have thought that up.  Good thing Lara is here to learn stuff like that.  I'm not that creative!

With the weather we had yesterday and getting worse into the night, (for those not in our area we had snow and ice and extreme low temperatures), it was a hard decision, but what a perfect opportunity for Lara to stay the night by herself.

During the day they did what they call a "light version" of her therapies.  She had breakfast at 8 am, 8:45 speech therapy, 9:30 occupational therapy, 10:15 recreational therapy, 11:00 physical therapy, 12 lunch, 1:00 speech therapy, 1:45 physical therapy, 4:00 occupational therapy, 6:00 dinner.  Now in between all of that are her meds, her breathing treatments, her doctor assessments, etc.  So a very busy day.  I think the proudest moment was during her second session of pt.  She was so exhausted.  Her therapist at one point asked her, "Are you getting tired Lara?"  "Yeah..."  "Do you want to lay down or do you want to keep working?"  It takes Lara so long to answer the therapist adds, "I won't always give you that option, but since today is your first day if you want to lay down you can, or you can keep working.  Which do you want to do?"  "I want to keep working."  Awesome.  That right there is what is going to get her farther.  So proud of her.

Last night was her first night without someone from the family staying with her.  Not sure it was as hard on her as it was on all of us.  With this weather and the road conditions, no one knew if we would be able to make it to the hospital in the morning.  Definitely proud of her.

As I have said before Lara is much more aware of her situation.  Heart wrenching moment of the day?  She asked mom, "Mom, was there anything I could have done to prevent this from happening?"  Mom reassured her, "Oh no Lara, this was nothing that you did or didn't do."  Lara tearfully says, "It's just not fair.  I try to be a good person and do what's right."  Yeah, a little choked up on that one.

Praying that God can give her the peace in her heart and as she succeeds through each hurdle put before her she can realize God is with her and nothing can separate her from God's love.  "If God is for us, who can ever be against us?"  Romans 8:31.

Sunday, November 21, 2010

99% vs 1%

I'm not sure if we are just getting to a tougher phase of this all, or if it is just me, but I am having a hard time gathering my thoughts today so bare with me!  (And forgive all of the errors of the previous post!  It was late.)

Last night Lara slept as well as one can with nurses coming in so often.  Time for meds, time to change position (she is not able to roll over or push herself to her back), time to empty the catheter, time for an ekg... so every so often she is woken up.  Not to mention two different sessions of her waking up and saying, "Lacy?"  "Yeah, I'm right here Lara."  "Okay"  long pause..."I wanna go home."  Of course I tell her some reassuring words.  She had a few cute moments too.  During the 1:30 am change she wanted to watch the news.  I asked her if she was sure because it was 1:30 in the morning (trying to encourage more of the night/day activities that can get confused being in the hospital for three weeks.)  I turned it on and it was all of the college football updates.  Once the nurses were finished they told her they were leaving.  She said "I just wanna hangout with my sister, we were playing football."  I had to smile.

This morning was an "easy" version of what is to come.  Only one session of OT and this afternoon was only one session of PT.  She will be having 3 hours a day of just therapy.  Split up into about 45 minutes each between three different focuses.  Speech, occupational, and physical therapy. 

It is hard to describe to people who haven't got to see her the reality of her true abilities.  I try my best, and I try to be honest and detailed without too much gory detail, or soppy sad detail.  Some people have wondered why Lara even needs one of us to be with her 24/7 or if that is more for us.  "Us" meaning her fiance, parents, and siblings.  From day one to today absolutely.  There were times she was tearing out her own tubes...not great to pull out your drain in your head, or your catheter.  There were times she was scared and needed some comfort for the moment because from moment to moment her knowledge changes, not just day to day.  There were times that one of us could get her to do something that was in the moment vital to healing, that a nurse couldn't get her to do (ie eat, breathing treatments, or just even cooperating with the nurse).  I'm not saying that we don't want to be there.  We all want to be there all day if we could.  There is so much information each day and it changes so quickly.  Just even trying to keep the 6 of us current and up to date on the latest information is difficult.

Today Lara had two moments that in those moments I think she was starting to realize what her new reality might be.  Do I think she gets that right now.  No.  The last neuro check I saw her do she told her doctor she was in Arby's.  Perfect example of literally one second she is regular Lara, and the next second, she doesn't really get it.  Today she was working with OT trying to wash up (which is difficult to do with only one hand, you have no balance of sitting, trying to hold your head up, and you have no left peripheral vision and it hurts to turn your head because of the big ole tube in the back of your head running down your neck).  Her therapist was asking if she had gone to school and she said yes she was in school for dental assisting.  I tried to give Lara some gentle encouragement without giving her answers or saying it for her (another thing for her AND us to be working on down here in rehab, we don't get to go behind her making better choices for her, answering for her, explaining for her), that she had graduated.  "Well, Lara are you still in school," I asked.  You could see her thinking.  "You aren't in school any more, do you remember why?"  "No."  "Try to remember, think back to what you do remember and work your way through it."  This was a few minutes.  Her voice started to quiver, and the look of fear...almost starting to cry, "I can't remember."  "You graduated.  Remember?"  "Oh yeah," her voice still trembling, but with relief, "I graduated."  Another moment like that later in her bed about wanting to go home and be with her family.  That quivering voice when she IS being the regular Lara just tears your heart out.  In those moments, I had a glimpse of her maybe understanding in that second, what her NEW reality may be.

She did have some visitors come in who she has been asking for and hallucinating about for some time.  Her little nieces.  When her little three year old niece came around that bed to hold her hand I came up close and saw the tear roll down.  Lara was smiling so big (well, one sided, today her left side of her checks and lips were not participating) it was a happy tear.  It has been exactly three weeks since she has seen them.  It felt good, for everybody.

Lara is now in rehab for sure another nine days.  Depending on so many different factors, it could be four weeks in this rehab facility.  Many of the staff the last two days have asked about living arrangements after her being discharged.  So many variables being involved, not knowing when, what will her capabilities be, what will she still need help with, will she still have room for improvement, how rapidly is she making improvement, can she go to one of our homes, they mentioned maybe a group home, for how long....I could keep going, but that would just bore you and pop my ribs out.  After seeing her two days in a row with what they are doing with her in OT, our reality is changing.  Obviously this is a life changing event.  For all of us.  These next few weeks are filled with so many "IF's" that it is hard to not let your mind run with them...in all different directions.  Especially when the nurses and doctors have told us a few times in the past two days to get some rest.  You need to be rested and ready for when she is discharged.  I think we are getting out of the "survival" mode and into...well I'm not sure what mode exactly, but easy is not apart of it at all.  In fact, survival mode may be "easier".  My vote is to wait and see.  No since in worrying about something that may not even be an issue right?  (99% of my brain keeps telling that 1% that.)  Pray about these decisions we will be having to make for Lara and with Lara these up coming weeks.  There will be some tough ones.

Ending on a much more fun note:
Lara during PT this afternoon moved  herself a bit in a wheel chair.  She used her right foot, and right hand and moved down the hall about 16 feet or so.  Huge.

Saturday, November 20, 2010

Moving again?

What a day!  We got news this morning about Lara's ct scan from last night.  Her not feeling on her left side and not responding well to the neuro test was kind of disheartening.  It is hard sometimes to stay faithful to what you truly believe will be when there are bumps along the way that make you question.

The doctor came in this morning saying he did see a hematoma (which is to be expected, oh, and that is basically like a bruise), and since Lara's brain was swollen, it is now slowly healing and the swelling is going down.  So with that happening the blood that is there from the rupture (which caused the hematoma...or bruise) and her regular cranial fluids are moving and shifting.  All of this to say, everything is ok.  It will take some time but hopefully the "bruise" will completely heal.

So, phew.  She's ok.  She is so ok that she wiggled her left toes today!  Dad was with her this morning and it is ever so slight of a wiggle.  So much so that if you saw it, you might think you didn't see it.  :)  Yep, that is a confirmed wiggle people!  She did it again tonight.

Lara is also officially admitted into rehab.  Who knew you could be moved to the rehab floor, be in a rehab room, but NOT be in rehab?  So we moved again a whole two doors down.  NOW we are in rehab.  What a crew!  They mean business over here and we haven't even met the therapists yet.  Everything is very structured and scheduled.  (Like all things should be.)  Lara will be having three different types of therapy, speech, occupational, and physical.  Each morning she will get her schedule for the day at breakfast.  Which by the way will not be in her room.  All meals are eaten in the dinning hall with the other patients.  Remember I said it is more nursing home style here.  Of course for the first few days there will be extra watch on Lara since she can only use her right hand and has a limited field of vision.  But no special treatment for her!

During the week her physical therapy will be "upstairs in the gym." (I just nodded like, "Well of course."  Did anyone else know that hospitals had a gym floor?)  You would think on the weekends they would do like us folks that live on the outside do.  Relax, sleep in, drink a cup of coffee and read a great blog.  Oh no.  Up and at 'em and they just do their physical therapy around here.  Hence the man in the open back gown and the red socks cruising with his walker with the tennis ball and the lady next to him yelling, "Heel, toe, heel , toe, heel..." and he really was cruising.  Reminded me of some kind of speed walker with a walker.

Occupational therapy will also be coming.  Well and doing occupational things!  Washing, brushing, getting dressed getting undressed.  Until you are in a situation like this you really don't think about alot of the things you do on a regular basis.  You just grab the tooth past to put in on your toothbrush.  Well watching Lara yesterday just pick witch item was the toothpaste to use it was an eye opener.  It took so long just for her to figure out what tube or container was what, much less actually grabbing it to use it.  Just that brain, vision, hand coordination thing has to be retrained for her.

Speech therapy won't just be working on her speech, but also swallowing and mouth movements.  All three of these therapies will be happen twice a day for 45 minutes each time.  I'm tired just thinking about it!

Friday, November 19, 2010

The not fun part of the roller coaster ride

Today was kind of a hard day.  That part of the roller coaster you don't like (you pick that part the up on the ride or the down which ever part you hate).  Lara had gotten so weak that she could hardly hold her head up.  The weakest she has been since she's been here.

For breakfast she sat and ate not even a quarter of her food.  Dr. Wang came in and explained to her that she is now at the phase of care where she has to do all the work.  Not having any IV's she needs to be eating more and sometimes getting her to do that can be a challenge.  Dr. Wang was not too happy about how weak she was and the fact that she couldn't hold her own head up.  She hasn't gotten much movement in since the shunt surgery either.  Before that surgery on her left side there was some movement.  Remember she even shuffled her feet with a walker and the help of three other people.

After a good rest she sat in a wheel chair with no head rest and struggled holding her head up.  We had to keep reminding her because she would just let it flop back.  She ate pretty good at lunch.  While in the wheel chair OT came.  She did some exercises then she helped with her right hand and foot to get herself over to a sink in her room to brush teeth and wash her face.  All of this sounds so simple, but let me tell you it was a process.  It took a little over a half hour just to do that, the wheeling over, brushing and washing.  The therapist definitely made her work for it.  Her left side is so weak.  She doesn't like to turn her head to the left.  She can't see very well out of her left eye.  Since Tuesday when the shunt was put in she has no use of her left side, leg, foot, arm, or hand.

She is getting pretty frustrated about not being able to get up on her own when she wants to.  Just wanting to take a shower and go the bathroom when she wants and needs.  (And let's be honest don't we all?)

She didn't eat much at dinner.  Her stomach had been hurting pretty bad and progressively getting worse through out the night.  Finally they ordered an x-ray and a bladder ultra sound.  As the nurse was doing her  neuro check and she wasn't passing.  Before this test (but since the shunt surgery) Lara has had sensation on her left side.  She could still feel us touching her.  This time no.  So much so that at one point I had taken a butter knife to the bottom of her foot (in a loving sister gonna hurt you because I love you sorta way) and still nothing.  Mom and I had noticed her foot was a little swollen (just assumed from not much movement and circulation) so we did some of her passive stretches and some exercises.  No feeling in her hand either.  Lisa did do a little pinch test on her inner thigh.  She felt that and I made sure to tell her that it was Lisa that did that.

The nurse wasn't feeling great about her responses so down she goes for a ct scan.  This time (well every time but REALLY this time) was kind of nerve racking.  She has come back now.  She was done with her catheter (for the second time) but again, her bladder doesn't seem to want to release.  Getting kinda lazy.  So maybe that was some of her pain her half liter of urine that she can't seem to release on her own.  We will know more when the x-ray comes back.

She's been back in her room about an hour and she is sawing some logs.  The nurses said if it was an emergency we would know sooner or if not we may not know the results of the ct scan and the x-ray until tomorrow.  Wish I had more information for you all.  But now you have to wait.  (Yeah, I don't like waiting either.)

Thursday, November 18, 2010

A Fond Farewell

What a day!  So much happening.  Lara did some early morning therapies and even sat in a chair for a good long while this morning.  It makes her so tired just to sit in a chair.  Before her surgery to put her shunt in, she had gained small amounts of mobility on her left side.  Since the surgery that mobility gain is now gone.  Pretty much no movement on the left side.  The doctors and nurses say she should gain that back.

Lara slept a chunk of the day away, and since the latest surgery she doesn't have much of an appetite.  Before dinner Lara got to take off her head dressing!  She even got to wash her hair with real shampoo and conditioner.  She now has two bald spots.  A big square on the front left side, and a big chunk on the back right side.  She keeps worrying about it and we keep telling her don't worry James can fix it.  Finally today she told the nurse washing her hair not to worry about it, "my James will fix it."  Lara's hair has gotten pretty long.  So after that washing there was a good hair brushing going on.  Her head and neck are so sore and tender it took awhile.

That is some good news to take that head dressing off.  But nothing compared to LARA MOVED ROOMS!  Lara is now in inpatient rehab.  Originally they told us at least 21 days in the Neuro ICU.  And that's if she was doing well she could move at day 21.  Yeah, it's day 18.  It was neat when we left ICU.  Nurses in other rooms poked out to say good bye.  She was a favorite up there.  Those nurses are great, like a little family that helped us through a crisis.  Now we move and will only be back to give our thanks and to visit, not as a patient.

Lara is now in a whole other building too.  It is more like a nursing home style, than hospital style. (If you can call those "styles".)   Pale blue walls, a bathroom with a bath and shower, a wall of windows with a view.  Yeah, she's livin' the good life.  With all of this going on she got a little cranky towards the end of the night.  We have to encourage, persuade, and coerce her to eat.  She is just so tired.  We saw the old Lara.  Even if she is a little short tempered with some, it is nice to see.  I love her telling mom to back off her food.  It's the old Lara.  Only a few hallucinations today.  There seems to be less the past two days.  But they are still there.  Her hand in the air on her phone.  Conversations to people who aren't there.  "Mom move this bowl."  Where there is no bowl.  But they are fewer and farther between.  We definitely know too that those things happen more when she is so tired.

Now what to expect?  We don't know yet.  She moved after the regular dinner time and had a late dinner so we will see more tomorrow.  It looks like there is more of a schedule on this side.  Because she will be doing more therapy, they have designated times.  Early morning therapy, breakfast, morning therapy, lunch, afternoon therapy, dinner, visitors and free time.  Sounds like a boot camp.  Kinda.

Some have already asked about coming to visit her now that she is out of ICU.  I know a lot of you want to come see her.  Give her a couple days to get situated to the new atmosphere and her new work schedule.  Yes, it is work.  She is still sporting the breezy gown and she is a little self conscious of it.  After this weekend we will probably have a better idea of what times and how often visitors are allowed.  I know it will not be during therapy times so she can focus on that.  They want her to use her energy to strengthen herself and to relax and visit after she's got a good workout in.  So keep praying, and sending those words of encouragement.  She is getting there.  With all of your help, God's grace, and a swift kick from her therapist, she WILL get there.

Wednesday, November 17, 2010

One word kinda day

There is only one word to describe today.  SLEEP.  Alrighty, now that I have told you what all happened today, let's go over something fun!

Lara is almost on week 3 of her stay in ICU, countless ct scans, a few surgeries, a couple ventilators, and a life time supply of drugs later and Lara is still in ICU with a very long road ahead of her.  Inpatient rehab, outpatient rehab, and who knows what else is along this path.  Lara just graduated from Everest in October and was on her way to a new dental assisting career.  That being said, Lara does not have health insurance.  This weekend there is a benefit being held at the Beach Side Grill and Bar in Port Orchard for Lara called "Local Bands for Lara".  The funds raised will go to help cover some of the medical expenses incurred during this time.  (Not too mention some pretty good bands and good food).


The Beach Side Grill and Bar does have a side for those who are under 21 or those with kids.  There is also a bar side where you must be 21 or over.  They have some great food and I have heard something about a pretty good steak.  There is a $5.00 cover charge and 100% of the cover is being donated to the "Lara Chavez Trust".  As well as 40% of the sales during that day will also be donated.

Thank you to Beach Side Grill and Bar, all of the local bands that are playing (Spence Brothers, Randy Gala, Revolver, Impact, Stand to Fall, Z-Rexx, Zeds Dead, Jug Struggle, and Greenbriar Project) and George Blessings with Greenbriar Project for all of your time and energy and your gift to Lara!

So come down THIS Saturday (November 20) from 1 pm to 1 am and hang out with friends and family like Lara would want us to!  You don't want to miss this!

Some have mentioned they are unable to attend this event but still want to help!  Anyone can go to their local Chase Bank and make a donation to the "Lara Chavez Trust".

Tuesday, November 16, 2010

Lara has gone green

Lara did some of her regular therapy this morning and sat in a chair a good while.  She didn't get to eat all day because of the surgery being in the evening.  As part of her "therapy" her tv in her room was put on the food network channel.  Thought maybe that would help her mental game being hungry and tempted and not giving in to temptation. :)


Dr. Brown decided it was time to put the shunt in Lara today.  She wasn't consistent in regulating her own inner cranial pressure so Lara had surgery at about 5 pm today.  The shunt is just a tube that goes from her head to her stomach (all of this is inside so you will never see it) that drains the fluid that we all naturally have between our brain and skull and basically lets her own body reabsorb it.  So Lara has officially gone "green" and can recycle her own fluids on a regular basis.

It was never really said amongst Lara's groupies, but there may have been a little nervousness in the air while we waited.  (Again, have I mentioned I am not good at waiting and how it is genetic?)  This being Lara's third trip down, going under, and nothing like confirming those airy worries with a pastor coming in to give a prayer and blessings (they did that last night).  We all really started to get antsy when this hour or so procedure (depending on what type of anesthesia they had to use, getting her under and wake up time) turned into almost two and a half hours.

Dr. Brown did say that it went ok, but her left side is not doing as well as it had been.  Back to not much movement on that side again.  (Ah, no worries, we'll gain it back.)  We finally got to see her back up in her room about 8:30 pm.  She has the big white wrap and netted cover over her head, but no intubation (thank goodness).  She did talk a bit to us.  Regular Lara!

Sunday, November 14, 2010

Do you feel a breeze?

Lara had what I would call a good day.  It being Sunday there is no PT.  Ahh, Sundays the day of rest.  That doesn't mean there wasn't anything happening!  She is getting stronger with each day that passes.  It is fun to see the nurses who haven't seen her for a day or two come back (some on shift and some when they are off just to see Lara because they like her) be surprised at how far she has come so quickly.

Today, we lost some meds, a catheter and we turned the drain off!  That's right, the drain for her ICP (inner cranial pressure).  If Lara can maintain and regulate it then she maybe losing the sucker tomorrow.  If she struggles, then by Tuesday the shunt goes in.  I know, I know, I have talked about that a few times.  Well that step is so big.  Not just because it takes a tube out of her head...ok that in itself is a big deal, but she will be able to move to a new room! (This is the really cool part of the roller coaster where you get the woo-woos in your tummy).  So many things a new room represents.  More therapy (bigger gains in progress), more likely chances of a shower (one of her current dreams), possibility of a view other than the windows into the next building over (on the other side of that building is a great view of Mt Rainier), closer to wearing some resemblance of a piece (any piece) of clothing (another current dream of hers), and of course the MOST important closer to her being to a place that her nieces can visit!

So yeah, the drain is exciting.  Or really it is the lack there of.  I have to say though that most of the day today, ummm let's say 95% of today's conversations and interactions were the real deal.  The real Lara.  Very little hallucinations or weird conversations today.  She ate pretty well too.  At dinner she ate a good 75% of her meal.  Poor mean old sister makes her do it herself.  You know she had that nurse feeding her her lunch.  Yeah, Lara, she milks it when she can!  She did all of her breathing treatments and she did them well.  When she did her left side moves her bicep curls were better too.  Although you all would probably laugh at the amount of movement, but really considering, she has gotten better.  She even got in a leg massage and a little back massage.

Her being so aware is so relieving.  But at the same time she is now getting much more self conscious.  She said it best today, "So you just want me to be lay here pretty much naked."  She wants to put on at least some pajama bottoms, but the nurses still say not yet, since she can't walk to make it to the bathroom.  She is really getting self conscious about bodily functions and what is showing.  Let's be honest, aren't we all in those gowns?  But I guess self conscious is a good thing.  That just means she is aware and is in reality.  So for now, we will enjoy those breezy little gowns.  Because when those are gone, that too will be a sign of progress.

Saturday, November 13, 2010

Your 24 hour fix

So sorry!  I know it is probably hard for those of you who this is your only source of information to go more than 24 hours with out the latest and the greatest.  Besides that, it is hard for me to decipher what I have shared and what I haven't.  The days are still, well, one big long day!

Lara is definitely making progress in the right direction.  Fever wasn't a problem today.  She did take a few more "steps" with the walker yesterday.  By steps I mean her right leg takes a very teeny step and she slides her left foot.  She moves about 4 inches at most with the help of a walker and three people.  But hey, 4 more inches than last week!  She has got to have her hair washed and almost a bath...well, if that's what you want to call it.  Or just a really wet sponge bath.

A big step is her swallow evaluation.  Passed it!  She is now eating food, but cut up pretty small, like you would a two year old.  The moment you have all been waiting for (drum roll) a daily dose of Lemon Lime Happiness!  (That will forever be it's name).  That being said the past two nights for dinner, when she could have something close to normal, she had fish...well, grey fish, over cooked rice and steamed veggies.  She ate the veggies and some rice.  Tonight she had meatloaf with a gravy on it, mashed potatoes and green beans.  I not only speak for myself, but for my older sister when I say...envision canned cat food.  Let's just say she didn't eat much tonight.

She did sit in a chair for a little while today.  Even almost stood herself completely up from the chair by herself.  We did her exercises and she seems to get better every day.  Like she now eats from the left side, but with her right hand.  Feeding herself!  She still struggles with turning her head to the left and seeing over there.  One of her gazillion (yes, that's the number) therapists wants us to interact on the left and make her use it more.  We will see with time if it is just a strength thing, or a blocked vision thing.  We are rooting for strength.  We can always get stronger.

Remember that ICU psychosis we've talked about.  When she is fresh off of a nap she seems to be the regular old Lara.  She makes her quick whit remarks, pumping eye brows, rolling eyes, Justin obsessed behavior.  When she is tired is when she struggles more with reality.  A lot of times she is staying in a hotel and we all have rooms.  Melvin's is down the hall this way and Mom's is that way.  She wants to go to Mom's room a lot.  To do things like shower or lay down when we are trying to get her to do things she doesn't want to do.  Today seemed to be a little better with that.  I'm not sure if it's because when she was resting she was full on sleeping, or if she is just getting better.  At one point during one of her breathing treatments for her pneumonia she took her mask off and said, "This is just dumb, let's just go."  Not really sure on that one.  I think a little of both reality and dream.

It being the weekend not a whole lot happens in terms of the doctor side.  She has been decreased on a good amount of dripped drugs.  Takes some by mouth and some not at all!  The drain for the pressure in her head has now been raised to 25.  They are saying we will know for sure by Tuesday if we can take it out, or shunt it.  I have even heard rumors of a new room by next weekend...shhh don't jinx it.

Thursday, November 11, 2010

"Cough, Cough"

Lara did some more OT and PT today.  Each thing she is trying to do she gets a little better at.  More movement to brushing her teeth, lift her left hand off of her head, took a few more scooches.  These things just exhaust her.  So while she snores, I type.  No really, she's full on snoring.  But don't tell her I shared that part, she probably wouldn't like it.

She did get to eat some french toast this morning.  Three cheers for actual food!  Still no to the lemon lime happiness.  I think when she can actually drink the stuff I may just provide it for her for life.  Who doesn't want a little happiness every day?

One of the doctors did talk to us about the hallucinations Lara's having.  She called ICU psychosis.  Being in such an exhausted state, but still not sleeping, one can find themself in this place between reality and almost like dreaming.  Lara has been doing a good amount of that.  She called to Rowyn (who has not been in this room at all).  I told her Rowyn wasn't here.  She said, "Oh, I was going to tell her to come up here with me."

She did some of her breathing treatments for her pneumonia.  Part of it is to get her to cough really hard.  I kept telling her, "Come on Lar, you gotta cough hard to get that gunk out."  After a few tries of getting her to cough she finally looked at me and SAID, "Cough, cough."  That Chavez since of humor is still there.  She kept asking if she needed to go to the front desk.  When I asked her why she would need to do that she said, "To check into this hotel."  Oh sweetie, this is no hotel you wanna check into.  She was so adamant about it I finally did call Justin so they could talk on speaker phone.  Poor guy had been here all day and night yesterday and had just gone home to sleep and shower before coming back.  But she was serious.  Sometimes it's just easier to "move that box off of her bed"  than to try to convince her there is no box.

She still has a fever.  Can't seem to regulate her temperature.  I'm sure that will come when the pneumonia is gone and her brain is healed more.  So for the rest of us sitting in this room we bundle up.  Lara is in bed with ice packs and cold wet rags and we are sitting next to her with our two shirts and a jacket.  Dad even wore thermals the other night.  At night it gets super cold.  But as long as it helps Lara that's all that matters.

Thank you all for your continued prayers.  Keep em coming.  Marathons are not just physically draining, but mentally and emotionally too.  But they are so much easier and more fun with company.

Wednesday, November 10, 2010

1:21 am

Not the text I want at 1:21 in the morning.  Well, not at any time really.  They were taking Lara in for a ct scan.  She was not responding her usual way, dilated pupils, slurry speech (to her already slurry speech).  So off she went.  Again...we wait.  Have I mentioned I hate waiting? (and that it is genetic?)

She comes up...no ventilator...no feeding tube.  Doc says she's ok.  Phew.  I know they have said so many times there will be these little scares, but man, they sure don't seem little at the time.  7:30 this morning OT came again.  She sat in the chair again, brushed her teeth again, more exercises.  She seemed to be getting better at those basics.  No where near how we normally do it, but hey, we'll take any kind of improvement.

So tired today.  Poor thing she wants some good sleep.  She did do a swallow evaluation today.  Got passed to eat mushed up chunks...yay for thickened chicken soup, mashed potatoes and gravy.  Still no to the "lemon lime happiness".  Her pneumonia is giving her a kickin' with trying to get that fluid out of her lungs.  She did a few sips of apple juice.  Regular and not the nectar thick kind, but no, not ready.  Poor girl yesterday when we were filling out a poster for her room she said one of the things for her favorite foods was ice chips.  We got a good giggle.  I don't think she will ever want to see another ice chip when she gets out of here.

She does really well for a while with being coherent, but then she will have her moments that bring us back down.  Either hallucinating, or conversations about weird things.  She asked the PT gal today if their checks had come.  "Checks?"  "Yeah, our pay checks."  "Oh no we get paid on every other Friday."  "Oh."  Mom says, "Why were you asking about their checks?"  "Because I want to get paid."  "For what?"  "I get paid to be here."

Dad had a nervous moment of Lara not recognizing him.  She looked at him and was calling him Tommy.  So he had to get closer to her face and say, "Who am I?"  "Oh, you're dad.  I thought you were Tommy Howard."  "Tommy Howard?"  "Yeah, you know, Tanya" as she points up to the side by where her nurse is.  "No Lara, that's Janine."  "No Tanya" pointing again up over her shoulder.  Dad said, "No, Lara, that is your nurse Janine.  Tanya's not in here."  "Oh well she told me she would be here."  I can't imagine having that moment of panic of my child not recognizing me.  Scary moment.  (No offense to Tommy Howard :) ).

PT came later in the afternoon.  Still Lara was just so exhausted.  When she is awake and coherent she can be pretty strong.  Having the rough night she had and an early session with OT she was just still so tired.  A little more with her shuffle today, not sure when I would call it a real step.

They did tell us they usually know by the 2 week mark if they have to keep the drain in or if they will have to put a shunt in.  So we are about day 9 I think.  But it all kinda runs into one big long day, so don't quote me on the 9 part.  The drain now is probably going to stay at least until Tuesday and then we'll see!  Anything past that and the risk of infection goes up.

Tomorrow is a new day with renewed hope.  Hoping she blows em all out of the water.

I need a business card

Tuesday you saw we tried to let her brain self regulate the pressure of fluids in her skull.  Not ready for that yet.  That's ok, we can wait and keep checking it or reality is she could have a shunt put in to permanently help her.

Lara sat in a chair yesterday for about an hour.  Worked some on that left side, bending her wrist, lift her knee, raise her arm, and bend her elbow.  She did minor movements with those, better than nothing but not complete movements.  I did get to pull up a stool while the therapist left and just sit and chat.  There are moments she seems to be completely coherent and aware of the situation.  Then at other times she starts to see things that aren't there, or talk about things that don't make sense.  Sometimes those moments can be sweet and endearing or funny.  Other times they are a little scary and sad.

I asked her if she got to eat anything after I had left the night before and she said, "Yeah, Justin made me pasta."  I just appeased her, as her dinner consisted of ice chips and a drug cocktail straight up.  Through out the day she was very concerned about Justin.  "Call him I want to know where he is right now."  Poor Justin was in trouble and he didn't even know it.  She didn't remember if she "had told Justin to meet me here, or at dad's."  Justin was coming after work and they were "going to go to newlife."

She tried to rest, but again, no one goes to a hospital to catch up on their sleep.  PT came and the big moment of trying to take a step.  The moment the rest of us were all dying to be there for.  Lara was so exhausted from sitting in the chair earlier, she had no interest in trying to get up again.  PT kinda made her.  She took a mini of a mini shuffle and let everyone know she was done.  So maybe another time when she's better rested.  She even said, "Mom, I'm so tired.  I haven't slept in a week."  So true.

I've mentioned before the neurological tests they do with her every two hours to make sure she is aware.  During this they pretty much ask the same questions each time.  Where are you?  What year is it?  Why are you here?  Occasionally they will add in something crazy like; what is your middle name?  This could annoy anyone.  Yesterday after a neuro check she says to Mom, "I just need to get a business card."  "A business card, why?"  "To just give to them when they ask me those questions."  Well, she may be on to something.  I'm sure the other patients on this floor would trade a cup of sprite (lemon lime happiness) for a personalized business card of their own answers.

Tuesday, November 9, 2010

Messages and THE VORTEX

Many people have been asking where they can send a card for Lara.  There is a link that you can use on the hospitals website to send Lara an "emailgram".  They print it off and send it to her room.

https://www.fhshealth.org/SendSupportEmail.aspx

For right now that is what we will use.  There are some other support and encouragement things happening.  I will let you all know when everything is together for those as well.

Thank you all for your encouragement not just for Lara but for us as well.  We all are definitely having to find some kind of crazy balance.  If you can even find balance on this ride.  Right now prayers for Lara's cranial pressure are needed.  No scare.  Over all she is doing good.  Ideally we want this drain out and her brain to regulate itself for the cranial pressure and fluids.  Tried some today, no success.  But will try again tomorrow.  Pray for the rest of us too.  We are all trying to incorporate some "real life" back in.  When all we want to do is sit with Lara.  It's so easy to get sucked into this hospital vortex.  I promise I only got here an hour ago when I have already been here three.  Then oops, in 15 minutes that three hours turns to ten.

Monday, November 8, 2010

Lots of progress!

What a great day.  After a good hour sleep in the afternoon.  Lara did so much!  Now that they don't have her on any of the sedation drugs, Lara is starting to come back to where she was on Wednesday/Thursday of last week before we had the vasospasm scare.

With the ventilator out (they took that out this morning remember), Lara can now talk again.  It takes some good listening, and sometimes hand gestures, but she does use her voice.  Of course the first thing she says when they take that tube out much to our surprise is not "Where's my great sister Lacy?"  but is, "Where's Justin?"  Justin had to go in to work today.  Though we all know his heart was aching to be with Lara.

She did some of her respiratory exercises.  Not always wanting to.  The x-ray of her lungs showed "gunk", as they told her, more than there was yesterday.  Suck in on this, blow out on that, now just wrap your lips and hold it.  She finally at one point took a tube out, looked at me and said, "I need to drink a lot of water."  She did too.  But no drinking yet.  She hasn't passed a swallow test yet.  So a little swab to wipe around her mouth, she chews on it a bit and feels better.

Physical Therapy was very exciting today.  It is amazing to see Lara take each little new step.  We all want to be there to see her wriggle that toe, oh now it's her ankle, oh my goodness she lifted her leg.  We celebrate her success as though she has won a major award.  When two weeks ago we wouldn't have thought twice about her little toe.

The physical therapist got Lara to use a lot of her own strength to get to a seated position on the side of the bed.  She even sat on her own a little.  She has to work on balancing her self, she leans still.  While she was sitting she told me to "pull 'em back".  The curtains, she got to look outside.  Granted it was the windows to the next building over, but there was sunlight.  She was so tired the therapist was thinking this would be good.  But Lara wanted to sit in a chair.  Once the therapist helped her to stand, she told her it was ok to sit slowly.  But Lara didn't.  She was standing for a good 60-90 seconds.  (Sounds crazy, but that was such a long time!)  Lara would have her sassy moments.  The nurse had her hand on her shoulder and could see the face she was making.  So she asked her, "Lara, does your shoulder hurt when I touch it?"  Lara says, "No, I just don't like people touching my shoulder."  Atta girl!  After Lara sat in her chair, the therapist was saying how much better she was doing than last week when we tried this the first time.  Lara sat in the chair a good 20 or so minutes.  She was even swinging her left foot and lifting her left leg a little.  Enough use and good enough stability in standing that the therapist was throwing words around like...walker cane.  You know not the regular walkers, but the big cane things that have "the claw" instead of just one baby foot.  Holy cow I got excited.  How cool would that be.  But we'll see.

Another big step was the drain tube in her head.  That is there to drain the blood and fluids from her brain.  They raised her to 25.  What that means basically is they are looking to see if her brain can self regulate the pressure in her skull surrounding her brain.  If it is still draining too much, then it could just need to drain more.  If it regulates it self, we MAY get it taken out as early as tomorrow!  Or if it needs to drain, and can't regulate itself, they will have to take Lara back into surgery to put in a shunt.  Not exactly ideal.

Towards the end of the evening she was being pretty funny.  I'm not sure how much is intentional, how much is us just being giddy, and how much is her cocktail of drugs, but it was nice to laugh.  She's getting some personality.  That part is fun.  To see her ask for blackberry ice cream, her cell phone and tell me she can't go shopping on black Friday because she has to work...it may seem silly, most of it she doesn't remember a few moments later.  But man it sure is nice.

Out with the tubes

About 8:30 am this morning they took Lara off the ventilator.  Besides the basic celebration of just breathing on her own, this means the doctors are feeling confident in her chances of not having an emergency trip down to do another angiogram about her vasospasms.  That critical high period for the vasospasms doesn't end until Friday and then the chance of them happening is still there, it just depreciates with time.  So she is still at high risk for vasospasms, but they seem to have the other indicators under control.

Lara did sit at the side of her bed, with some assistance.  Not as well as she did the other day...but she did it.  She can use her right hand pretty close to normal.  OT came and had her start doing regular care tasks.  She washed her face, put on deodorant, and brushed her teeth.  But let me clarify.  She needs help to do all of these things, and then needs someone to go over more thoroughly.  You know, like a 2 year old who brushes their own teeth, or washes themselves.

While laying down she did cross her left ankle over her right.  That was awesome to see.  They will be taking the feeding tube out today as well.  I know she will appreciate that.  She has already had some ice chips today.  But now we are back to square one with the "swallow test" that we talked about earlier.  They will have to do another swallow test to see where she is at now in terms of thick to thin that she can swallow. 

Her pneumonia is getting better.  She has some fluid still there.  She even is so polite as to cover her mouth when she coughs.  She is such a germ-a-phob.  It's just endearing to see.

She did get some of her sass back.  She was tired from sitting up.  It takes a lot out of her.  She had been telling them she was tired and OT continued.  She had shooed the therapist away a few times, but then she gave a final shove off.  In real life anyone would have told her how rude it was.  I just enjoyed it.  She had given them a good 30 minutes of telling them she was tired, she wanted to lay down, but they kept making her do things.  It's good to see her little spunk.  Reassuring that she knows what she wants and she will let you know!

I'll let you know more about today later...gonna try another PT session later.  The nurses are saying that usually during this phase people can get a little ornery.  Not our Lara ;)

Sunday, November 7, 2010

Shhh, she's sleeping

Lara has been doing well.  Mostly just resting.  As much as one can rest with all of the beeps, the doctors, nurses, and specialists coming in to check their specialty of choice.  Not to mention the fever that goes up and down making her hot and then shivering.

The nurses have been giving her a nerological test every two hours.  These tests tell a number of things that are going on.  They give us a pattern to see what she CAN do, so if she starts to not respond as usual they can check for the vasospasms that we don't want.

They ask her if she has any pain, sometimes there is a slight nod yes or no.  They ask her to wiggle her fingers, then toes.  The right side always does well (remember her aneurysm is on the right side of her brain, so it will effect the left side).  They usually focus alot on the left side.  That side even if she doesn't move it, we know she can feel.  Poor thing if she doesn't give just the slightest movement to a toe, they pinch the far out of her.  Not just on the toes either, they take it right to that tender inside part of her thigh.  OUCH!  She flinches and grimaces.  Two cheers for flinching and grimacing!

During the night they felt confident enough to let her actually rest and only give her a neurological test every four hours instead of the usualy two.  I'm no doctor, but I'll take that as a good sign.  That they feel confident enough in a longer lapse of time.  Don't get me wrong, I'm sure the great mini bar of drugs she is on helps too.  But quiet and uneventfull for now, is good.  So, here's to no new posts today!

Friday, November 5, 2010

The Roller Coaster has begun....Lara style

All of the doctors and nurses keep telling us about the "roller coaster" ride this will be.  Lara will be progressing well and making progress, and then she will digress.  Well this morning she wasn't responding like she had been. Not wanting to even really try.  There were some other signs that were cause for concern as well.  So her doctors decided to take her in for an angiogram.

For those that don't know what an angiogram is they send in dye into her vessels into her brain and the dye makes it visible to see if there are any vasospasms.  The concern with the vasospasms are essentially, it is a stroke.  The vessel walls of the blood vessels collapse constricting blood flow.  Day 4-11 are the highest risk days of this happening.  The risk will continue to be there even after day 11 but the chances of it happening does decrease with each day that passes.

A couple of things about this morning.  Lara has been doing so well, that to see her go back a little bit is a little worry some.  But then to see the doctors and nurses get...I wouldn't say frantic, but they were "busy beeing" about and pushed two other patients out to get her in for the angiogram; was a little scary.

If they saw it was needed they would perform the angioplasty or directly inject the drugs to the area.  So then we wait...I hate waiting.  I'm not a good waiter.  It's genetic.  They told us two to three hours.  Less than two hours later, Lara was back in her room and is intubated.  The doctor came and told us the results.

No angioplasty needed.  (sigh). She had a ct scan earlier this morning, and they did another one just before she went in for the angiogram.  Comparing those to scans that were about two hours apart there was no change.  Which for us, is good.  There was fear that raising her blood pressure and her not responding to it, had caused damage.  No damage done.  :)

So now we have leveled out from that scare.  And we prep ourselves for more of this "roller coaster".

Sorry if we take you all too on this up and down ride the next few days.  We get scared and we panic.  But then she takes baby steps forward and we get excited.  So consider yourself on this roller coaster too.  Arms up!

Thursday, November 4, 2010

The Magic Cup

Just got this message from Lisa (Lara's oldest sister...the REALLY old one :) ),

"This afternoon Lara said, 'Mom, I'm hungry.' So Sarah, (being the awesome nurse she is) ordered up some grub! Anything she eats right now has to be the "honey thick" consistency (remember the swallow test results from earlier today) So we had a chicken broth that looked like cold gravy, a thick milk looking stuff, coffee (tar) and the "magic cup".  The Magic Cup is a orange yogurt looking stuff that was frozen.  Texture like ice cream but packed full of nutrients.  The Magic Cup was her favorite.  She said it, 'feels good.'  I think she liked the cold smoothness because she moved it around in her mouth quite a bit before she would swallow it. The broth she would eat, but when I asked her if she liked it she just shrugged her shoulder. She had a few bites of The Magic Cup, followed by a couple of the broth.  Then repeat. Apparently she didn't think I was doing a good enough job of keeping her chin and cheeks clean so she snatched that napkin out of my hand and did it herself. We just laughed and said 'Alright then.'"

I had to keep reading this after a multitude of thoughts and emotions...God continues to amaze me.  And I know He will continue to do so!

Ok, Let's do it!

Lara was scheduled to be seen by the Occupational Therapist and Physical Therapist this morning.  Before that was happening, nurse Sarah (who by the way is the best nurse EVER!), came to give her her meds as scheduled.  Lara decided she wanted to get up and Sarah said, "Ok, let's do it."  So BEFORE OT and PT were even in the room Lara had her legs to the side of the bed and was in the process of getting ready to sit in a chair. Now keep in mind when we say this, it is not how you or I would sit up in a bed and swing our legs over, stand up and get to a chair to sit down.  She is assisted and struggled.  But she did sit in the chair (while belted for support).  She would stoop to the left (remember this is the side that she is having an extra hard time with due to the aneurysm being on the right side of her brain), and mom and Sarah would tell her to pull herself back up.  Lara would try by reaching with her right hand to push herself over, but still needed help.

While sitting in the chair the speech therapist came and did her "swallow test".  Apparently there is a process of thickness of things for her to swallow.  She started with ice chips and the therapist would feel her throat to make sure she was swallowing.  She has moved through pudding to "honey thick" and has even had "nectar" a few times.

Mom got a few pictures of her sitting in the chair so we could all rejoice and celebrate a huge accomplishment.  As mom was showing me Sarah said, "Remember that, embed that in your head because in a few weeks there will be such a big difference."

Lara is sleeping now.  She has needed some solid straight through sleep.  She must be pretty comfy...she's snoring.  :)  Praise God for snoring.

Thursday Morning day 4

This morning Lara has been put on antibiotics to fight a bout of pneumonia she now has.  There have been some great steps through the night and into this morning.  She has been eating small amounts of pudding (about 2 ounces or so).  They are now even crushing three of her drugs in the pudding.  And no throwing up!  YAY!  The doctors are optomistic and there are rumors of trying to get PT and OT up here to start some therapy.  By therapy we mean trying to sit in a chair.  There has been some waxing and waining of her abilites to do basic motor skills.  But over all, she is doing amazing.

Tuesday, November 2, 2010

The Million Dollar Question

Today has been a pretty quiet day for Lara compared to the previous few.  I thought maybe now would be a good time to answer the million dollar question.  What happened?  Here's is how it all began...

Lara woke up on Monday November 1 at about 10:30 pm she had a severe headache and was vomiting. Justin (her fiance) took her to Urgent Care there in Port Orchard. After being examined by a doctor, he said that she may be having a severe migraine and it may be a good idea to get her to St Anthony's in Gig Harbor for further examination.

Justin then drove Lara to Gig Harbor to St Anthony's.  By the time she arrived at the ER, she was unable to walk on her own. After a CT scan it was determined that she has a ruptured brain aneurysm and that she needed to be rushed to St. Josephs in Tacoma where there was a neurology department and the resources to further treat her.
From St Anthony's she was ambulanced to St Josephs.  By this time (about 2 am Tuesday November 2) Lara is non responsive and still puking.  They give her another CT scan (by now it is 2:30 am.) They find that  the aneurysm is much bigger and looks as though from the time between the two CT scans, the aneurysm slowed (maybe even clotted), but then burst again much bigger (but same aneurysm). Usually Dr.'s drill a hole and put in a tube to drain all of the blood and extra fluid on the brain BEFORE going in and closing the aneurysm. The Surgeon felt it best to immediately go in and stop the bleeding. Telling us to prepare for her not to come out of surgery alive. She goes in for surgery at 5:15 am. to repair the aneurysm and stop the bleeding.  Two and half to three hours later the surgeon comes out to tell us he has stopped the bleeding and is now sending her up to drill the hole in the top of her skull to put the drain tube to release fluids and prevent any more swelling.

We are now waiting. She eventually (over the course of hours) moves her right hand and squeezes Mom's hand. Her heart rate would rise with sisterly threats of bringing in bedazzled snuggies. And at one point she was moving her hand and when I grabbed it she got agitated and her heart rate shot through the roof, getting us in trouble with the nurse.  Come to find out she wanted Justin's hand not mine....go figure!  When Justin came back to hold her hand it instantly went down. Nurses tell us it is important to let her rest so the body can heal. Really hard to do that because we, as impatient beings, want to see her progress and progress NOW! She is on a ventilator, yet breathes some on her own. Feeding tube is in, yet she hates it, so they now have her strapped down so she can't fight so much. (Yay as far as I am concerned).

Big successes? The nurse opened her eyes for her, so she could see.  She saw Shelia Covert and Trista Covert and waved her hand.  Later the nurse opened her eyes for her again and she saw me.  I ran around to see her better and a tear ran down her cheek.  I grabbed her hand and she squeezed mine.  That felt better than anything.  She would nod vaguely yes and no, squeeze her right hand and bring up her right elbow, raise her eyebrows, shrug her right shoulder a little, wiggle her right foot, bend her right knee, and has feeling in her left foot.

Later that night into the wee hours of the morning she starts signing, pointing and a little more movement.  The nurses took the tape off of her eyes and she could open them when she wanted.  Which was nice.

So there you have the initial full day of events.  Don't worry, I'll fill the gaps between this and the first post on Thursday.  You would think there wouldn't be too much to miss in one day, but oh just you wait...