Sunday, February 28, 2010

Shamma lamma Ha-ha-ha! ... or LOL for you youngsters.

My Mom and Dad told me that Andie was speaking more and more during their visit today so I decided to go right to Good Shepherd to see for myself and to ask her stuff- like... how much she remembers from the month of February... her stay at LVHC and how much she realizes from her current situation.

When I got there she wasn't in her room but out by the desk with her one-to -one aid.... and not too happy. She was mentioning going home ... getting out of there... and going outside. I told her (and have before ) that once she follows the directions of the therapists and "plays their game" she'll be allowed to get out of there. She calmed a bit and I convinced her to go look out the dining area window. Once we got there I realized that she is the poster child right now for aphasia. We were advised early on based on the area of the brain that the aneurysm was in that this was a distinct possiblilty.

Aphasia is an acquired condition where the person has normal intellegence and can understand what's going on but cannot get the words together to express themselves. As we sat there she'd start a sentence in a normal sounding way but end up with gibberish. I ended up just completing her sentences with goofy stuff like Shamma Lamma ... ding dong and we rolled with laughter and it was like we had just shared a joke but she was the only one who really got the punch line.

Thankfully she was in good humor when I tried this... cause if she's not - glares and middle fingers and not very nice words were there.
Needless to say I've got lots of questions for the speech therapist tomorrow about how to best help Andie get her ideas out.

During the afternoon there were times I just sat and wrote in my note book what she was saying and I quote:
I think if we can get some TV
I asked her if she noticed pictures I'd left there of Dima and Josh and she said " I've seen them 97 times"
A guy walked by out in the hallway and she said again and again after he went by " he's cute, he's cute".
The rest of the day was interspersed with "I don't know" and I have no idea".

Then she was trying to unbuckle her wheel chair seat belt - something she hadn't done before - she was able to lengthen it but now gets the way to undo it - I was the only one with her and not so sure that she wouldn't try to get up so I made her put it back on and tried to turn it around to face her - she could still undo it so she was not happy with me that I was telling her NO and some faces were made and some choice thoughts started with me knowing their intent but her still not able to get it all out.

Her right side is moving more which I think makes the possibility of her trying to get up all the greater but she still needs to slow down and save her energy for the times that she's in therapy and being helped by the professionals just in case.

Her worst times that I saw were as I came in and after I said I had to go - the nurse was talking about getting her into the shower and she was all set right then - but disappointed that she had to wait . When I said I'd be going she was moody again and just unhappy.

At times today we just sat there and she kind of gave me a smile and we did that just before I left and the best words I heard all day came from her lips when she said "I love you" as I got ready to go.

Friday, February 26, 2010

more progress

My parents report that there was a little improvement today when they were with Andie at Good Shepherd. Since I wasn't there I don't have much as far as details but she was interested in looking over some magazines that we got from her place. She clenched her right fist in therapy but couldn't do it again in her room. The physician that checked her over upon admission to rehab did say that sometimes all you get is one per day - but at least it's better than nothing!

As far as visitors, we know that people would like to get in to see her but she's fighting a big battle at this point just to re-gain function of her right side and it tires her out plus she doesn't need the possibility of germs being carried in that could give her one more thing to deal with. When she's stronger and at a point where she won't have a problem with people coming in we'll let you know.

Thursday, February 25, 2010

Big Daddy

Since it was snowing this morning with more predicted through the day with it only getting worse I decided to try to beat the storm and head back here to Chester county where radar indicated that it was just on the edge of the storm. I went into Good Shepherd first - the roads were okay getting there except for some snow right in the middle of Allentown! - mostly they were just wet. Once I got out of the Lehigh Valley the snow was lighter and the roads were fine, people were traveling safely and not going too fast.

When I went into her room Andie was throwing her leg over the side of the bed to get up, had a mitt on her left hand and the poor young aide assigned to watch her was being whacked by the mitt as she tried to settle her down. When she saw me she pulled on my arm and gave me a big hug and slowed down a bit. She did get to sitting on the side of the bed with us watching her various tubes to see that they weren't pulled out. After showing her the snow outside the window I explained that I couldn't stay long and she should just save her energy for later in PT and sit calmly to talk while we had some time. She was mouthing plenty of words today, probably because she wasn't over-thinking it. After a nurse's aid who was older and had worked with her last week came in and kind of took over Andie seemed to be listening to them more and she told me to get going - so after apologizing to and thanking both aides for putting up with all that (though I've seen worse on that floor) I was headed down the hallway when I met up with Big Daddy headed in Andie's direction.

His owner was Andie's one to one aide the night before last and while she was there she mentioned her dog. Big Daddy is a very calm chihuahua who was an almost - therapy dog. He took the therapy dog class and didn't pass the final exam because he didn't get along with one other dog - with people, wheelchairs and all that equipment around he's fine. I told her we're definitely dog people and she brought him in when she wasn't on duty on last night. Then Andie was visibly happy to see the dog and gave him a kiss and held him while the aide talked to us and Andie. She even signed up for next Tuesday and will bring Big Daddy along then for her whole shift. As I was leaving today I wished them luck since Andie was being combative at times but his owner seemed confident that she'd calm down once he got in there.

Wednesday, February 24, 2010

she's walking

When I first got here this morning Andie was being fussy and acting sad / confused and she even called therapy "crap" in her mouthing it past the trach tube kind of way. Well, she napped a short time then once she got up she didn't want to go to speech therapy but went anyway - I think it was good to get her out of her room - she would stay there all day if they let her.

In speech therapy she started out by fussing and crying and it seemed like there was something that hurt her but she couldn't communicate that to us so the therapist gave her pen and paper and started off by writing ANDIE then Andie used her left hand and scribbled ANDRIA and they went back and forth - all the while she seemed to be calmer - and the therapist gave us some stuff to work on in her room and blank paper to use there.

We moved on to OT and she really didn't want to be there fussing and grabbing at me holding on really tight. We then went into a conference room and she seemed better than in the big, active, noisy room but still acting like something hurt, again unable to articulate it - by this point I'm wondering if she's just saying this to get out of the therapies. We stuck to it and I'd brought Perfection and Connect Four from my parents' house and we played around with those. At first she was trying to put the Connect Four checkers in through the front of the thing like the other puzzles she's worked here. Again while she's engrossed in therapy she's not fussing or complaining. She did learn to drop the checkers through the top of the game and eventually put them all in. Keep in mind that each time she does one then she looks around... and acts bored... and then gets around... to putting it in either with help from me or the therapist or both. During one of the lulls in action I asked the therapist about Andie's perception of time right now and she said we don't know since her communication with us is so limited. Then in Perfection you fit shapes into their appropriate slots and she needed quite a bit of help on that one and you could see her getting frustrated and at times looking uncomfortable but she was pretty much neglecting the far right side of the game even after the therapist moved it over to the left- this is something unusual per the therapist but she's not sure what this means.

She had some rest then went in for PT where they had her walking first with parallel bars for support then down the hall with a walker and three therapists helping her do it. It took a while to get her up and going but once she made it to the end of the hall there was a round of applause from the staff nearby.

It's hard to believe that she's only been here a week and that she's already able to walk... after much encouragement and hard work on the part of the staff.

Tuesday, February 23, 2010

the staff meeting today

The doctors and therapists who work with Andie had their staff meeting this morning and had all agreeed that Andie was not using her right side much and that they needed to determine why.
By the time the case manager and I got together the whole thing was out the window.

Andie's attention span was better today, her movement on the right is now more than just reflexive - keep in mind they're not huge strides but for where she was this stuff IS huge: she moved her ankle slightly, caught a beach ball also using the right side and walked slowly using parallel bars at first just a few steps... then ... I could see... frustration?... sadness?... as they let her sit on the closely -following wheelchair and then exhaustion and more sadness.

They tell me she's aware of where she is and what's happening - or not happening as far as her abilities, I think she realizes it and breaks down at times. But still she's moving the right side you can praise her all over the place and she's still gonna get to the lounge on her floor and make us stop and insist she wants to go home. Insist she wants to get in the bed when she's back in her room but tough love keeps her in the wheel chair since if she is in bed too long there's a greater risk of pneumonia and she needs to build up endurance by just sitting for now.

I asked just this afternoon if she would like to have friends come in to visit and though sometimes she's iffy with responses - this one was clear - no! Her hair isn't done up and every time there's a chance in front of a mirror the first thing she does is goof around with her 'do. In a way I wish we could have a way to visually update everyone but once she found out about it -OH! - she would be sooo unhappy to know that she was seen like this.

Each day is looking better - hopefully this improvement keeps up.

Monday, February 22, 2010

Monday Feb. 22, 2010

My parents and I made our way to Allentown this morning for the "family orientation" meeting at Good Shepherd. As things turned out it was just us and representatives of the various departments as they explained their roles in Andie's recovery process. Since we were the only family there we were able to ask individualized questions we understand that it's hard for each person to answer until they have their staff meeting tomorrow and they all get the big picture. For now it's just speculation on their part and it will continue to be to some extent since this type of brain injury (aneurysm, blood leaking inside the skull, prior medical issues - the surgeon said this was due to "uncontrolled hypertension") is not as predictable in outcome as one where there's some sort of trauma to the head and you (okay... well, the docs) know which brain cells are effected. I'm told again and again that they see huge strides made by these types of patients all the timand I can see why.
They have her up and at 'em if she likes ot or not and even if she grabs onto the side of the bed and doesn't want to get up - on Saturday it took three of them to get her out of bed! But the movement and physical work serve to move the body and blood and to help the brain to find ways to compensate for the deficits that she now faces. Since she's still lacking a spark of recognition most times I think that all the time on general anesthesia had an impact and the healing of her brain will take time so that she's not just sitting there looking tired or bored or fidgeting with stuff. I'm told that patients with this type of injury often become belligerent and testy. I can already see that when she's not getting her way she's the most expressive and can only imagine that once the words do start coming she's still not going to be happy about the situation and will then have a way to tell us about it. She had had some movement in the right leg, not much in right arm or hand. When my mom was trying to put on a shoe that she had kicked off and didn't want back on she mouthed MO-THER and when the therapists do stuff whe's unhappy about she'll mouth NO but so far that's her range of verbal communication the trach tube is still there though capped but she's not really trying to say things yet. During most of the day she kind of stares around the room and likes to people watch. I was also advised that people in this situation can feel overwhelmed by too much activity or noise so I try to take it easy and even step outof the treatment rooms while she's in therapies to see if that makes a difference in her agitation but right now she's all about her focus on every little thing around her.
I'm telling you, these days make me tired I can only imagine what it's like for her. I used to feel really guilty about leaving her when she was sedated and still in the hospital. Now I feel like she's in good hands, she does have a one to one aide to take care of every need andkeep her from hurting herself and she's on her way to recovery so it's not quite as bad.

Sunday, February 21, 2010

Good Shepherd history

When people learn in the course of conversation that our two boys were adopted from Russia the first thing they do is do a double-take and check out the kids, next they usually ask if they're biological brothers and then they make a statement about what a difference we made in their lives by adopting them. Chris and I don't think that adopting them was any heroic feat . We just formed our family in a way that's different from what most people do. We realize that their lives would have been different had they stayed in the Russian orphanage system.

I found it ironic that as I looked at the history of the Good Shepherd Rehab Hospital I learned that they started out as a an orphanage and a place where people could come to heal. The founders were known as "Mama and Papa" our kids have called us that since we left the orphanage with them in September, 2004. I found it remarkable that Andie ended up in this wonderful place and if there is such a thing as good karma around what we "did for" Josh and Dima it's definitely been paid back by having Andie get into such a great place when she really needs their help and all the good things they do for her. The staff has been great, all wonderfully caring and compassionate and they treat her with dignity and respect. I feel grateful that she's there in such good, capable hands.

Saturday, February 20, 2010

a few links

Click on the highlighted links below if you want to read about Andie's care for the past few weeks.

Good Shepherd Brain Trauma

Good Shepherd history

Where she started this whole thing Lehigh Valley Hospital

Her doctor there Dr. Li

News Flash

There has been movement in Andie's right leg and arm ... possibly in the right hand as well. I caught up with her this morning as she was dong Occupational Therapy and the therapist said that Andie was fighting them as they were getting her out of bed this morning and in the hubub she thought she saw her fingers move. We're hanging out here in the patient dining area for this floor and just minutes ago she was kind of jiggling BOTH of her legs up and down. She still seems bored by all of this but you can tell that she likes people watching as we tried to position her near a big window to look outside she turned her self by pushing the wheelchair with her left foot to face the door to see the hallway. This lounge is great since I can have some internet access and she gets a change of scenery from being in her room. Watching OT is frustrating in a way cause I'm watching as she tries to fit shapes into the correct places and sometime she just looks away or focuses on other things around the room and I just want to say - just do it so you can be finished if you're so bored but I stay out of the way and keep my mouth shut. Her frustration level comes and goes you can tell that she's sometimes looking around in disbelief and it's hard to know if she understands what's going on or not. With aphasia - which is a possible diagnosis for her she can have regular intellegence and just not know how to communicate with us. Or she can think we're speaking gibberish and not know what we're saying at all... time will tell. We're going to Speech Therapy at noon then my parents and I will go to her place to get more clothes to alternate with the ones she's already worn here.

Friday, February 19, 2010

They tried to make me go to rehab but I said 'no, no, no'

...if you don't get the title, that's okay, Chris didn't either but for those who know the Amy Winehouse song I think it's a catchy tune and how could I go into that place and not sing it in my mind? Yeah, I know it's not about this kind of rehab.
So, another day of following Andie around and being as unobtrusive as possible while mentally cheering her on as she's trying to do the tasks asked of her. Mostly things went like this: she sat around in the wheel chair , trach tube and feeding tube still in, she fidgeted with those until a therapist loaned us a ball for her to squish. She has her day planned out by the nurses as far as therapies. She still has a one to one nurse to keep an eye on her at all times so she doesn't grab and pull out anything that shouldn't be removed. This place has been great so far as far as staff and the facility. In the morning we did therapies and she had a break - so I left to let her rest and to get some more suitable clothes to switch up what's been worn. Got back in time for afternoon therapies and brought some family pictures and lotions and shampoo from her place to have familiar things around since the nurses said that was okay.
A friend of Andie's sent me an email about looking up a guy that Andie knew from the Fusion Grille in Allentown (thanks Kim) so I went in search of him during the afternoon and I now know that there is such a thing as Chief of Nursing and even though I didn't speak to him, while I was in the administrative offices a gracious woman introduced herself as "Sally" as she saw me reading about the origins of the place, we struck up a conversation which led to talking about Andie's situation and I met her secretary and they were both seemed empathetic and compassionate. They said they'd relay the message to Mr. Miranda that Andie was in the hospital and where she was. I got an email message from him later on that he was in the Bethlehem facility and would be there later to check up on Andie's care. I would like to meet him so I can answer any questions he might have about what happened to her. Anyway, I knew I recognized the woman who'd just spent time with me and once I left with her business card in hand I realized I'd just met Sally Gammon the President and CEO of the hospital! She stopped in later while Andie was in PT and I was impressed by her bedside (wheelchair-side?) manner as well. She has a great personality for what she does.
I plan to go back tomorrow and my parents will also be there for the therapies and I'll head back to my place from there since my parents are going to be able to visit her more than they can during the weekdays.

Thursday, February 18, 2010

tired and hungry

At first stimulated looking all around to take everything in, focused on details, going to therapies of all sorts, rest then more therapy all while attended by a one - on - one aide. At the end of the day - tired, spent, achy and hungry... and that's just me ... after my day of following Andie around for her first therapy day.
When I first got to Good Shepherd this morning Andie was sitting up in a wheelchair and surrounded by therapists and aides starting in on their evaluations. We got to know each of them as the day went on. She had PT and sat up well - I'm told that 's really good so they can build on that for later skills. During Speech therapy her answers tended to be nods until the therapist did some writing then Andie seemed more responsive and gave correct answers - their first goal will be to help her to communicate. There was also OT testing and it seemed like she learned how to move shapes into the appropriate spaces since as the test went on she got better at it. The same test will be done again in next few days to verify what they saw today.
When there's down time she spends alot of time watching what's going on around the place - it's all new to her and she seems very curious. I keep thinking about how I'd feel if I'd been lying in a bed for almost three weeks with next to no stimulation.
She goes from looking at small details like her fingernails to the IV stuff in her arms all the while giving some pretty expressive faces. I can see puzzled, mad, sad, angry and then if she grabs for something she's not supposed to pull on and I stop her she shakes her head and motions with her left hand as if to say back off! or what? then she rolls her eyes.
The team of people working with her are doing evaluations now and will meet on Tuesday to confer and then give us their findings and projections for the immediate future.
I've been reminded again and again that miracles happen every day and that each case like this is unique. Today I met with a social worker who was great with getting me set with paperwork to do and with providing information about the realities of what the future may hold for Andie. While we were talking she pointed out that you can't go wrong in a building with the 23rd Psalm written around the outside of it. I have to admit that as we were talking I read part of it just outside her window.
Keep Moving Forward.

Wednesday, February 17, 2010

A new chapter begins...

This morning I got a call that they would be transferring Andie from the hospital to rehab today then after packing a few things and putting them in my car I got another call that they needed to wait for some test results before she could go. Since I was ready I went anyway to just spend time in the hospital with her. She seems the same as far as times of some rest and then activity where she looks around at the parking lot outside or at the TV I put the Food Network on at times since that's her favorite channel but then it seemed cruel to have that stuff on when she's still on a feeding tube. As we hung out in the room doctor came in with some of the test results - with nothing being alarming they thought it was okay to send her to rehab and wait for the rest of the results there. Ok, so the move was back on.
As they were readying her to go two guys wheeled a gurney down the hall with what was obviously a body under a sheet - the nurse and I kind of stopped and looked at each other and I asked if that was what it looked like and she said yes they try to disguise it but you could still tell what it was. On the other hand from time to time at the hospital they would play a little lullaby and that was done each time a baby was born.
So off to rehab we went and my parents and I were there as they checked her over and we met her doctor and got her settled in for the night.
This place seems very organized - we'd already got her stuff there since they gave us a list of what she's need earlier this week. They told me at the hospital that she'd made a thumbs up with the right hand this morning and when I mentioned that I haven't seen that she said that sometimes one per day is tiring for the patient. We have a schedule of what her days will be like they'll do intensive therapies a few times per day and the doc there said she'll be tired from all of it. She's still on antibiotics for bronchitis, and she's going to need to rest up. The people that can get in are limited, and for the record - I wouldn't want people coming in to see me in this state. When things improve enough to allow visitors, I'll let you all know.
I'm planning to be there tomorrow when the various therapists make their evaluations and get the therapies started and I'm very much looking forward to watching her recovery.

Tuesday, February 16, 2010

VW Beetles, adoption, aneurysms

I've noticed that VW Beetles, adoption and aneurysms are all things that when you mention them most people have had direct experience with or at least a story to tell.
In case you don't already know, Chris has a 1974 Beetle with it's own "barn" with tool- shed area that we had built outside our house , our boys were adopted from Lomonosov, Russia in 2004 and now I'm seeing what it's like to deal with someone who's had brain surgery.
The stories I hear from people about friends and relatives who have gotten through all this brain stuff, Intensive Care and then rehab and are now living their lives remind me that there are better times to come.
As I read about this and talk to the nurses I do realize the odds that Andie has already overcome. The odds that someone with this type of issue makes it to the hospital are not all that great something like 11- 20%, then once they get to the hospital, get diagnosed and then get into surgery they might not make it out at all.
So... though this is painfully slow for us to watch and wait til she knows we're around - she's already better off than many people who have had to face this.
Things are pretty much the same today as far as her mental awareness. Usually she just needs rest but then she seems active sometimes and then there are times that her pain meds are increased depending on what tests they need her to be still for, then that really knocks her out.
And so... we continue to wait.

Monday, February 15, 2010

More of the same

In a way the time spent with Andie in the Critical Care Unit crawls... with all the disconcerting sounds and sights but in a way it flies because you're not so much focused on what time it is as you are - how's the BP? or how's the breathing? or what does that distressed look mean?
When I first got to her room today I could see that questioning, puzzled look as if she's trying to figure things out followed by some activity with trying to get the mitt off - so I took it off for a while and guarded her various lines at the same time, she kind of scratched at her scalp - must be itchy and just put the arm up to adjust her pillow but the mitt has to go back on when we're not right there so she can't pull things out. There's a spark that's there at times and still there are times where she looks around blankly.
There are times that I just sit to let her rest while I make my little notes or work on crossword puzzles but there are also times that she's active and moving around. She also does stuff like rapidly raising her eyebrows or patting my hand or pulling it to her or kicking her left leg. There's also a kind of smirking while I talk to her then it can also swing to turning her head away from me and the nurse while testing her to see if she can raise her arm or wiggle toes. There are a range of emotions still going across her face and sometimes you can see sadness and frustration and what looks like screaming and during course of the day today there were a few yawns.
I usually take my ipod in to try different music for her to see if there's a reaction but recently there's been no indication of a preference for anything from country or John Denver to classical to my German music.
I'm told that once the ventilator is off and she can breathe on her own for 48 - 72 hours she'll be moved to Good Shepherd Home. For me it's hard to see but the people at the LVHC seem to think she's getting better. There are also issues with elevated temperature indicating an infection. More cultures went out today to see about that and my impression is that once she's in rehab they expect her to be able to be actively involved with the physical therapy and right now I just don't think she's there yet.
I'm back home to Glenmoore for this snowstorm - hasn't amounted to much yet... to get geared up for kids to get back to school routines - they've had enough time off with skiing in VT, snow days then the holiday today it's about time that they get back to really learning stuff!!

Sunday, February 14, 2010

Feeling the love

You guys should know that when I walk through the parking garage and into the hospital and go up the elevator and into the critical care waiting area and get buzzed into the hallway and around the corner til I can see Andie's room I'm steeling myself for what's to come visually and emotionally and remembering all the vibes and love that you are sending our way.

Due to lack of time I haven't responded individually but I've read your messages and at times have been taken aback - I don't feel so strong or like I'm doing something unusual.
The power comes from gathering myself and the good stuff all in my mind when I'm going in to see her.

Right now the hardest part is walking away from her when I have to. I wonder if maybe just a few more moments of stimulation of her brain might make a difference? If something could take a turn? Will I miss it?
As I have to leave I think about how unfair it is that she has to be confined in that confusing, disoriented, weird, uncomfortable place - and I get to walk out into to the world. There but for the grace of God.....

Now what???

Andie is still in her holding pattern. Somewhat awake at times and fighting the tubes and when she's alert you can still see the facial expressions of surprise... questioning... rapidly rising eyebrow - movements are using the left side , not the right... You can tell her to look at you and she can though sometimes she stares right through you --Well, Paula Deen was on TV so she took the attention away more than once. She was kind of playfully putting her foot on my legs at times and would pat, pat , pat on her leg or my hand and she seemed engrossed by my gold bracelet for some time but then again when I try to have her pat or squeeze my hand once or twice it goes un answered.
Then, as my Mom was putting out calls to let family members know what was up here we got the news that my uncle who has been having some issues and has been on a ventilator for a while has relapsed and is in the hospital with pneumonia and staph and is not doing well and so things with him seem to have taken a downward turn.
I'm ever the optimist and believe that positive thinking and karma are real cause-and-effect things. I'm sooo done with all this bad news!

Saturday, February 13, 2010

Raw Emotions

Excited! The nurse said since alarms went off when I walked in and that's what it all means in Andie's world right now.... Okay then, at least she didn't tell me to get lost and drive back home!
Right now without regard for being polite or how it makes people feel or anything other than where she is at that moment in time you can see what she's feeling and going through by reading her face.
In my notes from today I wrote: Confused, Amused, Sad, Irritated, Inquisitive.
There seems to be a rhythm to her rest and activity but the nurses have said it's hard to rest there with all the "normal" ICU sounds and with the fact that they do wake the patients at least every hour just to be sure that they still wake up.
There are some very active times - Oh... was she unhappy about me and the nurse putting a mitt on her hand so she couldn't pull out the feeding tube going into her stomach.
Boy, did that hand flap around and did she make all kinds of frowns even when she saw it coming at her and later just because the mitt was there. Sorry, but I didn't want to even take a chance of things being pulled out. I was able to hold her hand under the mitt but it was a big deal to her. We knew her intent... get this off!!!! NOW!!!
I tell her "Look At Me!" when I have something important to say to her about what's going on- and she usually does. The whole time I'm telling her that she's in a good place and she's with good people and to try to get better anat times you can see : Wild eyes and unbelieving eyes and left leg trying to go over the bedrail and once trying to kick near my head... alrighty then, good exercize in a case like this - maybe she does want me to go home??
Her left hand reached out and petted my sleeve and she pulls on my bracelet and pats our hands when she's in good humor all while moving her left leg.
The trach tube seems like a better situation for breathing. Still general discomfort.
At times when she's moving about we can see the frustration / sadness that her right side is not doing what she wants it to do.
She was just irritated in general early today and when we came back she seemed to be asleep and though Mom and I stayed for quite a while there was not much more than an eyebrow lift or two as we talked in the room. They did switch up the pain meds so maybe that's the reason for the difference.
I hope each day we'll Keep Moving Forward.

Better every day

Yesterday - two weeks since the surgery - (oh yes, I'm counting the days) Andie was doing well enough to sit on the side of her bed - for a short time, not huge news but it's still improvement. apparently her nights have not been very restful so my parents have been limiting the time they spend with her so she can get the rest she needs. I'm headed up now - to get there for morning visiting hours and so how things have improved for myself. I've got pictures of my boys to hang in her room. They don't allow kids under 12 in the Critical Care unit and I can see why, the sights and sounds there can be scary even for a grown-up. Plus I don't think they'd want Josh hollering up and down the hallways. The kids has no volume control his lips are still only while he's sleeping... he literally talks himself to sleep.... and he's LOUD and I think Dima would be freaked out by it all.

About how Andie knew she had the aneurysm in the first place: At one point she had lots of energy and was having a good time at work when all of a sudden she lost the energy and could not get up to move around. She had flu like symptoms and a severe headache - she told me at the time that it felt like a migraine or like she was having a stroke, since someone else at her work had the same type of symptoms and she thought it was just related to the flu. After a few days the headache persisted and she passed our while sitting in - not driving, thank God! - her car after coming out of a grocery store in Allentown. When she came to she was not sure if she was coming from or going to work. Around the same time people at work noticed that she was grasping for words and somewhat confused at times. A good friend took her to the Lehigh Valley Hospital Center thinking they'd give her a pill for migraines and she'd be on her way. Wow, little did any of us thing she'd have her head cut open, little clothespin-like clamps put on a blood vessel, some of her brain cells taken out because of the damage to them!, multiple tests and scans, and still be there on the road to recovery two weeks later. How things can change!

So, I'm outta here and will report later from my parents' house.

Thursday, February 11, 2010

Much Improvement

My parents report much improvement in Andie today. She's more alert than she had been and looking around the room, rubbing hands and arms that are close to her and seemed to smile when my dad made a joke. She still tries to take the trach tube out when her hands are free so they still have her hands tied down for her own good. They seem to think that if she gets the tube out since things are swollen they'll have trouble getting it back in - not good.
Chris has a job interview tomorrow so I'll need to be here with the boys when they get home from school so my trip up to Allentown will have to wait til Saturday. Then the kids are involved in hockey games for the weekend so I'll stay in Whitehall with my parents at least til Sunday evening.

Wednesday, February 10, 2010

To Andie Since I last saw you awake

This will be for her to read once she's back to normal. (As normal as she ever was... I can say that- I'm her sister!)
Since I last saw you awake...
It's now February, 2010.
It's hard to imagine waking up two weeks after going under general anesthetic.
On January 29, 2010 I was introduced to the Critical Care Unit of the Lehigh Valley Hospital Center and the people there know me and Mom and Dad by sight. Dr. Li was your surgeon he's got an impressive resume and we felt comfortable with him. Like he would have answered our questions all night after the surgery. I think you're lucky to be so close to cutting edge care.
The boys and Chris went to Vermont with the rest of the family - The kids were in ski school at Okemo during the first week you were out of it. Dima skied a black diamond and was rated a level 8 in their ski school. Josh skied Hot Dog Hill and talks about it all the time and he's now started snow boarding in our back yard. Right now the snow's a little too deep he can barely walk in it- Oh yeah, we've had two major snow storms and have about 45 inches of snow on the ground right now.
The Super Bowl was played last Sunday.
Dad and I went over to your house to tidy up so you're set when you're ready come back. Mom did laundry and they have some stuff at their house in case you come back there before you're ready to go to your place.
Your friends, neighbors, co-workers and the family were all concerned about how you're doing and I sat down about once a day to keep everyone up to date on your progress. I've also got a notebook I make notes in when we talk to the docs and nurses so I can remember what they said and so I can look stuff up when I have internet access and so you can see what's been going on too.

... If I think more to write I'll edit it in later.

Tuesday, February 9, 2010

Some Improvement

A little bit of good news: The tracheotomy operation this morning went well and the tube for breathing that was in Andie's mouth and a potential place for bacteria and stuff to grow is now out of there.
And a little bit of bad news: As they drove to the hospital this afternoon my parents got a call to okay a filter in the blood lines since they've detected blood clots in her arms and legs. They said they'd be at the hospital soon but the docs didn't want to wait that long so they okayed it and they went ahead and got it done right away.

Some more good news: The general sedation has been turned off and now her eyes are open and she's looking around the room. The nurses have indicated that she should be better each day now that she's off the sedation but she's still got a mitten kind of thing on her hand so she doesn't pull tubes out. My dad said they tried to get her to blink her eyes on command and while she did once if they asked her to blink twice it would take quite a while between blinks. Hard to say what that is, just reflex? The times I was there and they brought down the sedation they tried to get her to hold up two fingers or thumbs up but that hasn't happened yet. I'm glad things are looking up and at least she's coming around - it was tough to see her like that and I'm really looking forward to getting back up there to see for myself - she's still in Critical Care but hopefully she'll be better and better every day.

Monday, February 8, 2010

Still the same

My parents got a call today that the doctors want to put a trach tube in for Andie - as opposed to the tubes that go down her throat to help with breathing. This was something that was mentioned as a possibility early on so it's not big surprise. They'll do the operation tomorrow morning and then she should be able to breathe better and the irritation of the breathing tube will be alleviated. Everything else is pretty much the same. They took her off the general anesthetic propofol (the Michael Jackson drug) since there's a nation-wide shortage and are using another one instead. There seems to be no difference in Andie with the new drug.
We're supposed to get more snow tomorrow on top of the huge storm we just had if things at the hospital are still the same I'll decide in the morning about going up to Allentown then or waiting until later in the week until the snow is done and the kids are tied up with hockey games anyway.
Either way, I'll keep posting here if there are any changes.

Saturday, February 6, 2010

No change

Things at the hospital are still the same, I'm planning to call the hospital for our morning update from here early tomorrow since my parents will be on their way to their church when shift - change is done and the nurses are settled in for the day and have a moment to talk on the phone.

I am grateful for our - Andie and I did grow up there and I know I feel very much at home there - church family at St. John's in Fullerton for the support for my parents and me during this trying week. Pastor Becky's news buoyed my spirits as I heard of her grand daughter - just born at the same hospital where we waited and waited for some good news. Andie also has a beautiful prayer shawl in her room and it makes me feel connected to all of you.

Looking forward to a positive up date when things improve for Andie.

Snow day!

Here in Glenmoore we have 18.5 inches of snow so far and they expect it to keep coming down into the afternoon. Before I decided to come back here I spent time at the hospital yesterday and though it's hard to predict exactly what will happen the nurses seemed to think that things with Andie could stay like they are for up to another week. They said that two weeks like this is not uncommon since it's such a traumatic surgery.
She's still sedated and still has tubes everywhere still on antibiotics and still waiting for the cultures to grow to see which area is causing the fever. They have her on a chilled blanket and fans on her to keep the fever down and when they pause the sedation down she still doesn't have the reflexes that they're looking for and she still doesn't follow commands - "put your thumb up, hold up two fingers". It's hard to walk out of there when she's still in that state but at this point it's going to take time for her to heal. I made it here yesterday in time to see the first few flakes of this storm fall as I came up my driveway. A friend who's a respiratory therapist will be at that hospital next Tuesday so I'm going to be there by then to get her into the NSICU so she can see what's going on it can't hurt for another set of trained eyes to check things over. My dad called this morning to check in and my parents are close enough and there's so little snow up there that they'll be able to get out to the hospital today.

Thursday, February 4, 2010

Feb. 4, 2010

Andie's condition remains the same.
I was told by today's nurse that "it's only been a week, and this was a major thing."
Well, today as my dad and I spent time organizing at her place he noted that a week ago was when he got her call that she was in the hospital. What a difference a week makes and how a week can crawl by. I know each case is different depending on the person and the circumstances but I was expecting to have her wake up and be responsive in maybe a day..... and here we are....
They still reduce the sedation each hour or so and test to see if she's responsive. Both of her eyes were open today - but still staring and she's not following commands. The left eye had been swollen shut, a normal thing in a case like this - and an ice pack was on her when I first got there today but once it was removed things seemed much better in that regard.
Today I spent time with Andie early and mid day (my parents later on) - the woman at the NSICU desk knows me now so I'm buzzed in without a badge. Hard to believe it's gone on this long and hard to predict how long it'll continue.
With the pending snow storm I'm torn now between heading back to Glenmoore to see Chris and the boys once they return from their Vermont ski trip and staying here with my parents closer to the hospital. In the morning I'll go over to the hospital again - watch, listen and decide what to do.

Wednesday, February 3, 2010

Feb. 3, 2010

Andie's still heavily sedated and therefore has been out of it for most of the day. She's still on antibiotics because of infection, now has high white blood cell count - cultures went out to be tested and in a few days they should have reason for that.

When they paused the sedation today to test reflexes we saw her withdraw in response to pain - more strongly on the left side vs. right side but still not sufficient enough to warrant keeping the sedation off. She would pull at her tubes and rub her eyes if she could so that's not good - And back to the same holding pattern we all go. The staff at the hospital seem confident that things will improve - wow, last week at this time I certainly didn't know as much about the human brain as I do right now.

While Andie's not aware that we're around my Dad and I have spent time at her place trying to figure out where her personal papers are. Things like birth certificate and insurance information are not things you usually chat with relatives about so this is like the ultimate guessing game. It's geocaching without clues, hints or coordinates. We're also doing quite a bit of cleaning and organizing to make things easier so she can come home to her place comfortably when it's time. I know I'm physically tired so Dad has to be too.

I must say, these blogs are not only a way of getting information out but it also makes me think it all through - the days are kind of muddled together at this point - and this makes me stop to organize my thoughts. I'm always touched that you guys care and will let you know when visits to the hospital are okay. Good Night.

Tuesday, February 2, 2010

Feb. 2, 2010

Another day spent waiting for Andie to wake up. The good news is that the vasospasm was alleviated by going through her groin and shooting drugs into the area to make it stop. Well, that worked but while she was having it done her lungs were "giving her trouble". I was present while she had an EKG done and the guy that did that seemed optimistic about her recovery and the nurse said the results of that were good.

She's still zonked out from the meds they give her and they say she doesn't really know we're there but she does move around and I still think that increases when I put the ipod in her ear or when she hears our voices.

My dad and I spent time today cleaning up her place, doing laudry and getting it ready to live in when she's back. I also met with the financial person at the hospital and talking about working out those details. We now have to figure out where she keeps stuff like pay stubs, birth certificate and stuff like that. We've already found some of the papers but need to devote more time to that tomorrow. My thought right now is to get stuff like that done before she is aware that we're there and we have no time to do other things. Oh yeah, if you haven't already - let your realtives know where you have that kind of thing I feel like I'm trying to read her mind about where she would think it was logical to have put it.

It is a weird thing that when I'm NOT at the hospital I keep wondering if I should be even though she's not aware of us then when I am there it feels so weird... dreamlike and almost like a panicky fight - or - flight thing where I'm edgy and can't wait to get going again. Well, ok there's no one to really fight... but just get me outta here!! I'm also acutely aware of every movement and every sound so every moment is pretty intense. Still I know she'd be there for me and I realize that it could be me in that bed and she'd be there for me.

When I'm in her room I've been trying to calm my self and therefore the room, I hope ,by focusing on all the good thoughts you guys are sending and trying to be the connection to it all for her. She seems to move her hand in a purposeful way and maybe I'm reading into it what I want to see but I'm keeping up the positive thoughts while I'm there and look forward to the thumbs up from her that means something good.

They started her on antibiotics today since there seems to be somthing going on with her lungs. I know people want to visit but it's just not a good time to do it. She wouldn't want any of us to see her like this and she doesn't need more things for her body to fight right now. I'll keep you updated about when things are better and when the time is right for visits.

Thanks again for the good vibes, prayers and thoughts. Love to you all!

Monday, February 1, 2010

Monday Feb. 1, 2010

So, I'm back in Whitehall and just back from the hospital. Andie's up and down and from what today's nurse said these cases tend to be this way. She had a scan today that verified that the surgery was successful in clamping the aneurysm but at the same time they also verified that she's in "mild" vasospasm. This was something that the doctor mentioned earlier that is not uncommon in people of her age and it can cause a stroke. They're doing three things to help push the blood through the brain in the area where the blood vessels are trying to clamp down. They're keeping her blood pressure up ( ironic since uncontrolled blood pressure was the cause of all this in the first place) They're also diluting her blood so it doesn't clot and cause a stroke and keeping her fluids up so the blood can move. She's also got a mild fever and it seems like an infection where the breathing tube is. Keep your germs at home...Since she's still not in a state that she'd want to be seen in I'm still going to say to hold off on visits until later.

I spent some time just sitting there with her reading while holding her hand - they say she can hear us but won't remember this all later on. I get the feeling she's kind of asleep at times then gets active other times so i take my cues from what she's doing and when she moves I talk to her but if she's still I let her rest.
She definitely tapped our hands and grabbed for hands when we held hers and then took it away for a second. Still seems like she's not using her right side the left leg and hand are the ones that move and the nurses indicate that the right foot is forcefully taken away as a reflex response to pain but not so much for the right arm. When she's with it they can ask how it feels - tingle? numb? and go from there.

Since I had my ipod with me I stuck one earphone in her ear while I listened to the other to hear the music she responded to and to be sure it wasn't too loud. There was definitely a response as she raised her eyebrows during high pitched parts of the music -mostly John Denver. I stopped into Friday's and updated the manager there and mentioned the ipod and they remember that Andie really liked 70s music when they played it so I think I need to put more of that on my ipod I'm going to take it in when I go and let her listen more. If nothing else it's stimulation and can't hurt.

Today's nurse was very informative about what might be coming up - maybe a trach tube to help her get more oxygen maybe another procedure to inject the blood vessels directly to stop the constricting which means opening that area up again. We shall see.

We'll be back there in the am and my Dad will call later on tonight to check in with the nurse just before we go to sleep.

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