Wednesday, March 31, 2010


Dima and I spent some time today at Andie's getting the final things out of her old place and doing a final wipe down of counters. Now that's all done and she and my parents won't have that to devote their evenings to and they can settle into a routine around here.

Andie noticed while we were out at dinner that her right hand is closing / clenching better than it had been lately. She also seems like she's not over thinking her choices of words and they're flowing better now too. She still mixes up words and you have to listen to figure out what she means but if she takes her time and you listen with some patience you can help her got it out.
Things are looking better - she said that the case manager that interviewed us last week came to her yesterday and said that she thought she already saw some improvement.

Sunday, March 28, 2010

99 to 98?

Chris took Josh along to Dima's hockey practice and to keep him occupied they put him in the score keeper's booth and let him run the timer during the game. While he was in there he was goofing around with the rest of the controls and at one point the score on the board read 99 to 98 and later on while the kids were playing he pressed the buzzer button and all the kids on the ice stopped then once the coaches saw what happened they were like "keep playing, keep playing!"
Dima did score a goal against some pretty good players. I think that his new flip-the-puck technique might have something to do with the extra practice he's getting during the almost continual game of hockey that gets started after school in our driveway and at times includes a bunch of kids from the neighborhood. Josh befriended some of the older girls (imagine that !) on the school bus and he's got them coming over when they have time on school nights.

Yesterday Josh got to go to Grandview Raceway to see some dirt racing - not official I guess these guys just get their cars out after working on them over the winter and run them to see how they're doing. The best part about his day was when a tire flew off a car as it went around a turn.

While they were at the racetrack Dima and I got out to Marsh Creek State Park to go find some newly placed geocaches there. We found some cool stuff while exploring the side of the park that we don't normally go to. Each cache we got to I hung back once we got to the area and then Dima was the one who actually uncovered the cache. He was proud of himself for finding them and I must say that he did a good job of sticking it out for the several miles of hiking. At one point we walked across a narrow boardwalk like thing and he thought that was cool and one of the highlights of his day was getting his shoe stuck in the mud while crossing a small stream.... as in shoe stays, foot keeps going... luckily he was smart enough to jump on one foot til he could sit down while I retrieved his shoe! Nice day for a hike and we got 4 caches along the way.

Andie's out-patient days

Thursday morning Andie and I rode on the handicapped - equipped bus that picks people up to go to therapies at Good Shepherd. Once we got the the neurotherapy section of the building we realized that the building was one that we looked out at from Andie's in-patient days. We could see her old window and she was trying to describe that to the nurse and case manager who were doing her intake interview and she said "they just let me out of that nuthouse!" They told us that they've had patients from the other building - once they start coming to - try to hold pillows with messages written on them up at the windows and some write messages on the back of their daily menus to try to let someone know that they're locked in over there... Funny and tragic at the same time.

During the intake interview we joked around about different things like some of the things Andie did when she first got to Good Shepherd and she seems amazed that she doesn't remember most of that. The case manager explained that not remembering that stuff is the brain's self defense mechanism and that it's hard but she's been through a life-changing event and things WILL be different from what they were before the brain surgery.

After their evaluations the physical therapist said if Andie sticks with her homework exercises three times a day she should be done with at least her part in four to six weeks! At times it's been hard for me to believe what people have told me during this whole thing - She'll come out of the coma, she'll get out of the wheelchair once they get her moving in therapy, she'll be able to go live at my parents' house, but time and time again she's done as predicted. Is that disbelief on my part my defense mechanism so I don't get my hopes up too high and get disappointed if it doesn't happen?

Since she's unable to negotiate the steps to get into the place she was renting her stuff has mostly been moved out, furniture will go today and then Wednesday should be the last day there. She'd been renting there for something like 15 years so I asked her how it feels to be leaving there and she was noting that she has no more stuff, she has no money(she carries a little purse around and noted at outpatient rehab that she has none in there) , she has no job and she has no "people" I'm not sure exactly what that meant - but that she realizes that things are different and that they have to be until she works to get back physically and til her brain heals enough to have things become clear for her mentally. With the anemia being better she does seem to have motivation but the trauma of the whole thing plus the list of meds that she's still on plus the fact that just re-learning basic skills makes her tired but I think she does have a new attitude and will hopefully continue to lose weight and keep moving once she's on her own.

Wednesday, March 24, 2010

"This is the best, this is the best - so delicious!" Andie was saying as she settled into the real bed here last night after so much time in hospital beds it's great to be home.

Tuesday, March 23, 2010

"Are you people nuts? I wanna go to Friday's!"

Andie's here helping to do dishes and Mom had her using a sponge to squeeze water from one side of the sink to the other to exercize her right hand (at the suggestion of one of the therapists) and Andie was joking around about how easy she had it while lying around in rehab and just as I sat down to type this she was going "Are you people nuts? I wanna go to Friday's !". She's free from rehab and happy about it but getting tired, which is understandable and she's still so excited that communication is really minced up right now.
When I got there she was having breakfast with her roommate and chatting up a storm we had to hang out a while till the final checks and details were taken care of and then we went around giving hugs and saying goodbye to everyone. She has an appointment with that doc to be checked again next month and so we'll definitely be back there soon. In the mean time we had to round up her meds and appts with regular doc for basic check up and blood work. Thursday starts her out-patient therapies at Good Shepherd. Same place, different building and different therapists. I'll tag along for that since she's apprehensive about it and about communicating what they need so I'll follow along with my little notebook that I've held onto all over these past few weeks.
She seems really happy to be here and though it's an adjustment for everyone I don't think it'll have a huge impact on my parent's lives and once she's ready to be independent she can get her own place again.
Wow, I think I'm tired too!

Monday, March 22, 2010

ready to launch....

Looks like all systems are go for a release from Good Shepherd tomorrow morning.

Watch out Allentown, she'll be prancing out to the parking lot - well, okay as much as one can prance... while using a walker....

Blood work was done bright and early this morning and she was in good spirits all day today still dealing with the communication difficulties so when you see her out and about she might not remember your name - she's only remembered the names of a select few of the therapists and nurses that she's seen every day for the past five weeks. When I'm there she looks at me as if I can read her mind to translate but sometimes I'm just waiting it out, giving her time to think and to find words to describe whatever it is she's trying to get across.
Today while a friend of hers was there she described "margarita" with barely a word, but also realizes that she can't have them anymore. She's being diligent about her diet and good about stopping when she's full, being aware of the diabetes plus she's been talking about going walking each day.
If you're up for a walk, let us know and come on down when you want to stroll around the block or on the Ironton Rail Trail here in Hokey. If she has a therapy day she'll probably be tired so we can work around those. I think she'll be building up her endurance so have patience and be aware of what's coming up cause she sometimes needs reminders to be sure that things are done safely.
She's come so far I was talking about taking pictures when she's leaving tomorrow and she made it seem like it's no big deal. NO BIG DEAL??? Do you realize that you came in here on a bed with no movement in your right side and are now set to walk out the front door?
Trying to thank the therapists for all they've done is beyond words - I can't even imagine all the lives that they've touched. I don't think I'll be able to say much without getting choked up. We'll have to go back once Andie's able to bake them a cheesecake and take it in there.

Tomorrow's the first day of the rest of her life.

Sunday, March 21, 2010

movin' out...

Moving is tough enough when you have to deal with your own stuff but trying to go through Andie's stuff and trying to decipher from her what exactly she wants to keep / donate / gift to people really complicates this whole thing. We've got til the end of this month to deal with it all. There's a possibility that we can donate stuff to a client of one of the women I met last week at the Center for Independent Living in Allentown but I haven't heard from her since I left her a message listing the stuff available on Friday. If anyone wants some free furniture let me know - especially if you can help move the stuff - I can tell you what we've got.
There's also some stained glass - making supplies I'm thinking the Baum school of Art in Allentown might be interested and should call them. If anyone wants that sort of stuff let me know. .. uh... soon please.
Andie's continually amusing the staff over at Good Shepherd we sat there talking with one the aides about some of the stuff that went on early in Andie's stay there that she really doesn't remember - she definitely feels sorry for some of the things she did. I assured her that she just wasn't herself and that the aides there know that.
We were told last week that Andie would probably need a cane when leaving rehab and I was trying to be pro-active and had my mom get one from the stash of donated stuff at church then were told that the walker would still be needed for the immediate future. I think Andie's still afraid of falling so the stability of the walker will be a good thing especially while going out into the world where there are so many little obstacles that you don't even thing about until you have to deal with details like this.
Right now things are still on track for Andie to leave GS Tuesday and go to our Mom and Dad's place - pending blood tests and final evaluations tomorrow....

Friday, March 19, 2010

... and so is the stomach tube, Whew!

I got to Andie's room this morning just as they were prepping her for the stomach tube to be removed - ... hung back by the door , and heard the little "pop" saw the balloon that had just come out and it was done. No big deal - they asked her if she felt okay, any nausea, any pain - she was kind of wincing... but refused Tylenol, any vomiting?
Well I could have answered that... uh, I didn't see anything moving in the wrong direction... I guess they have to go over their own checklist... after she had a few minutes to lie down off we went and she had her breakfast. Her day was uneventful and since there have been no issues at all with the trach tube or stomach tube so it looks like she's a go for a Tuesday release Good Shepherd Rehabilitation Hospital's 4th floor brain trauma unit.
The after - release details are still being worked out.

Trach tube is out!!

Andie just called here at my parents' house to say that the trach tube is out! She sounded fine - and like she's a bit flustered but speaking well and she indicated that it was really no big deal when it came out. Next is the stomach tube which should be out by the time I drive in there this morning.
Moving right along... there's an open house at an apartment facility that's in our old elementary school - I'm going to check it out today at noon and try to get her on their list for an opening - I think it would be great to have her right here in Hockey once she's ready to live on her own again.
Headed into Good Shepherd right now.

Thursday, March 18, 2010

She's the man!!

What a roller coaster day! Chris compares his job hunt to a roller coaster- you get your hopes built up and then then something happens and down you go! Andie had that kind of day.
Started out with her being all chipper while we met her at the ENT's office to check out her trach tube ... and from what we understood, have it removed if everything was fine... So we got to the "ghetto" as Andie later called it - it was a strange, maybe I should say interesting ... location - in a former train station on the south side of Bethlehem. After intake procedures and just general hurry - up - and - wait to get to the doc he informs us that since the initial tracheotomy was done elsewhere she should return there to have the tube taken out. Whaaat???? He was talking about the procedure being done in an "acute care" facility in case there were complications and so she could be monitored for 24-48 hours. My idea to persuade him that she'd be properly cared for was that she could go back on the one -to -one care immediately after we returned to Good Shepherd to cover any emergency situations. He was insistant that she should be admitted to a hospital... and Andie got less talkative as she realized that she was not going to have it done there. The respiratory therapist that accompanied her to the appointment was a great companion for this - interesting guy - a former EMT, former deputy coroner (after asking about that experience let me tell you -- always -- always wear your seat belts, people!!) and a body guard on top of that he's a got black belt... but as entertaining as he was it still didn't take away the disappointment that Andie felt. I could see that she was stunned and so was I but being strong for her meant looking forward to doing things the right way and making sure every step was covered so there'd be no setbacks. I was working my brain to try to figure out how to get around it but this guy was willing to do a visual scan of her vocal chords to be sure that there were no issues there and that's a crucial step to getting the tube out, so okay get that done and see if he'll proceed.
They squirted topical spray up her nose and in her throat and we waited to have it take effect while they saw another patient.
One of the therapists just today asked what I'm writing when I carry around my little notebook - mostly I have it cause this all seems like a dream and some day we can all - including Andie sit back and read it. Well, today when the doc asked about the trach tube I was able to put the notes to use as I went back and gave him every bit of info he asked for. Plus I write down the day to day ups and downs and then I use them to remind me of things to put here in the blog.

So... bottom line from this appointment was that Andie was disappointed - not devastated that the tube wasn't out... she was quiet and asked that people NOT come to visit later on and I asked if I should be there for her speech therapy and she said something like "if she wants to" so... I went.
Then the report from the ENT got to Good Shepherd and the team of people treating her met. After we went into Recreational Therapy in a not so up-beat mood... and then she had to go into Speech Therapy while still feeling like the anesthetic was working on her mouth...

Just as we got back to the 4th floor brain trauma unit the nurse practitioner, Jamie (a woman) who has been working alongside the physician met us and broke the news that since things look good and since they have the ability to handle emergency situations she will have the trach tube and the feeding tube removed tomorrow morning!! At that point Andie was like --- Whaa?? Whaattt? .. she then told her that that she loves her and after we got the details about how tomorrow's going to go and then as we were going to hang out in the dining area Andie was going: " She's the man! - she's the man" While Jamie's going " I might have to go check about that!".

Wednesday, March 17, 2010

What a difference a month makes!

Feb. 17, 2010
Then: essentially she was lying in her hospital bed to be transported with some signs of awareness, but not much more.

March 17, 2010
Two friends stopped by after Andie and I had dinner together and were just about to settle into her room for some TV. We started out in Andie's room and moved to the dining area on her floor since her room mate was trying to sleep. We spent time discussing - and cracking jokes about lots of different things and Andie was a significant contributor to the conversation, mostly with us trying to figure out exactly what she meant but still she didn't give up on trying to make US understand. There several times that she'd get stuck on a word or name and look at me like I'm in her mind too and should interpret or translate in some way. Then look at me like I'm crazy cause I don't get it...

The company was a good thing for her since she didn't know they were coming ahead of time and couldn't think too much about how she looks and she spent the evening laughing instead of watching TV. She's able to hold a conversation if you're willing to give her time to form the words with her mouth that are inside her head. If you've been thinking about visiting - now's the time to go - evenings seem best since the therapies are done by then.

Tomorrow she's got an appointment with an ENT in Bethlehem to check out and hopefully take out the trach tube. Once that and the feeding tube are out it only a matter of a few days til she'll be on to her next phase : more therapies but at a different location - once she's established in the new place and new therapy schedule we'll arrange for visits to Friday's and other familiar places to bring back a sense of normalcy.

Wow - just last month a part of me never would have imagined or dared to hope that things would be going so well!

Sunday, March 14, 2010

Paula Deen / Andie's email

Since reading is one of Andie's strong suits I've created this email address for her and we can help her get the messages.

My parents can print them out and read them with her or I've shown her some pictures and emails and read them with her on the computer in the 4th floor dining room. She's still shy about going online herself but she knows there's a computer that she can use at Good Shepherd once she gets more confident with it.

She's still out there communication-wise. A few quotes from today:
"I'm stupid, but I'm not dumb. "
During our laughing, questioning, explaining morning, addressed to me: " I'm gonna kick your royal rump!"
Her happiness this morning was obvious when I brought in her recipes that she'd been compiling for a recipe book after much explanation of where to find them.... i.e. her life's work...
"LOOK AT THESE BABIES!!!" while leafing through her notes.

We saw a blurb about a promotion with Philadelphia Cream Cheese on Paula's website yesterday while I goofed around online and read stuff to her. After she saw the ad she got so excited that she had to remind herself to stop and think so she could try to talk.

Whatever it is, the promotion doesn't start until March 22. She wanted to send her recipe ASAP and she was like, "fine.. I'll just give it to MOM!" Well, Mom wasn't there at the time so to appease Andie we sat down and I typed it up word for word ( including since the words wouldn't come out Andie drawing a picture of a strawberry to tell me about a recipe!) and sent it on an email to myself and will get it out to Paula as soon as the thing launches.

In the mean time I saw on that she'll be doing something at QVC next week -

If anyone out there has any connection with her people or the QVC people I'd LOVE to spring Andie out of there for a day to go shake her hand on the way into the studio, through the airport or whatever

It would be something for her to look forward to and I'd love to surprise her with something like that. At this point I'm wondering if an email to her staff would help get her schedule and maybe arrange an encounter of some sort. I really don't know much about Paula Deen but I saw her on Craig Ferguson just last week. Since I TIVO his show and watch it when kids are not around I didn't get it live but if I had I'd have called the nurses at G.S. to turn it on for Andie to watch. On the Craig show Paula Deen licked the stick of butter that she'd just used to grease a pan - now there's something I can relate to - butter, butter, butter! Was gonna say she's a girl after my own heart ... but that might be too true! I know, I know - not healthy but it is tasty!
Another option would be if someone wants to take Andie's recipe for banana split cheesecake and help me get it baked and then present it to Paula - If you have this sort of thing in you - let me know - I'm so NOT a baker and it would make for good comedy but I don't think I'd get the cash prize for baking!

Saturday, March 13, 2010

Mom and I got to Good Shepherd this morning to find Andie sitting up in bed, swinging her leg around as in - where have you been??? She relayed that she was up early and looking around for us and as we were on the way in she called Dad to ask for something. Once we got there and after much patience, laughing and "Oh, never mind ... -oh, geeze! " on her part I figured out that she was happy that I took some of her hair rollers in and now wanted hairspray - Eureka! She said It looked "bee-ut-i-ful" and now look at it!!

Sample quotes: "Duh!... Some I do good and some I ...duh!" ... along with very animated facial expressions, another one - " doodle! - .... who the heck is doodle?" " these are lackin' - NEVER MIND!".

Mostly converation is her trying to say something and other words come out then we laugh and I try to guess at the point of what she's saying and somethings we narrow down and sometimes she just gives up. I try to have patience and give her time to think but it's tough to just sit there and not put words out there for her and IF we get the gist of what she wants to say it can take quite a while.

Mom and I spent time sitting with her out in the entryway to her ward - just a change of scenery from her room then we moved into the rec therapy room and goofed around with the air hockey table then literally sat there for over an hour while Andie tried and tried to get her point across about something where: you win something... ? she drew a rectangle and numbers in the corners...? she wrote out the worn BUNNIE ? she mentioned the letter T ? she mentioned something starting with a W and I got stuck on Wendie's - nope - not it... she mentioned Union Blvd... still ???... I really have to give her credit for sticking with this one and not giving up. We FINALLY figured out that when we were going over the calendar and she saw that Dad's birthday is coming up she wanted us to take a coupon that she had from Ruby Tuesday's (I guess it's on Union Blvd, near Wegmans and there's a bunny on the back of the coupon) and give it to Dad since she can't do something for him herself. WHEW from all of us!

Even though she had only one hour of OT today I think it was a very productive hour. She ended up across the therapy table from a woman who had fallen and has a brain injury on the right side. She's very articulate and was a nurse - she was saying things about how she feels at times , like people think she's stupid, or she's sad or thinking why me... and then telling us that her family mentioned a book and / or a T- shirt that says "I've had brain surgery - what's your problem?" and as she spoke about the emotions she's gone through Andie was saying " I 've had everything".

I think the support group for adult brain injury patients will be a good next step for Andie so she can talk more about this stuff with others who have been through the same sort of thing.

When I first read literature about aphasia I noticed that the one newsletter was called "Let's Talk" - Okay, it's put out by the speech therapists, and that some of these people that can't truly express themselves have a monthly meeting. Oh, the irony.

Friday, March 12, 2010

There's a "cooking club" at Good shepherd where a bunch of the patients get together and make food. Yesterday they made cookies and today three of them worked on making spaghetti and salad and garlic bread. It's a great idea cause it gets them to do all kinds of chopping, standing while cooking and buttering the bread that's therapy even though it doesn't seem like it.

We had a meeting this afternoon with a representative from the county and a case manager who were filling us in on options for her for once she's ready to leave Good Shepherd and while we talked about that stuff Andie was in therapy, then she was finished and came in to see what we were talking about and she then got the gist of what was going on and was really upset when she realized that when she leaves in about two weeks she'll most likely be going to another facility and not directly home. She was deeply disappointed by that and kind of moped around until we got her talking again after dinner. This is a situation where tough love is going to be best for her. I can imagine that she feels trapped in that locked brain trauma ward and to some extent trapped in her own mind by the lack of ability to communicate with us, that's bad enough but now to be told that she won't even be independent like she used to be has to be like a nightmare. It would be nice if she could come to my parents house but here she'd only get therapy two or three times a week but at a facility she'd get it every day like she does now. We've been told that the first 3- 6 months will be the time of greatest improvement and to keep her moving during that time will better her chances of a full recovery. If she were here I think she'd be more likely to lose motivation and slack off. It's easier to say no - and shut up! to us than to the therapists.

After lunch this afternoon while Dad and I were telling Andie about all that's gone on since her surgery. She was looking at a calendar that we'd taken in to refresh and work on some short term memory and she couldn't believe that so much time had passed since she knew what was going on. She doesn't remember her hospital stay at all - no surprise there and I think she's just becoming aware of what's going on. I asked her if she remembered the helicopters coming and going at LVHC and she - for a moment - thought I meant she had been brought in on one. At this point we could tell her anything and she'd believe it wat the truth. Hmmm....

Her communication has become more like disjointed phrases instead of random words and she gets frustrated with herself cause she seems to know what she wants to say and then stuff just comes out then she laughs and I usually laugh too while trying to figure out what she's talking about. Luckily she's pretty good humored about it and just kind of shrugs it off once she tries a few times to tell us something and can't get the point across. I'm glad we can laugh with her in those cases and she doesn't think we're laughing at her. She has been somewhat paranoid about being talked about.
Still, when she's not over- thinking of what she's trying to say she can get real thoughts out. She told me to shut up and once we went back and forth and she said "shut up first" after we'd said it to each other a few times while we were joking around. I brought her a hard sided glasses case and was trying to get her to say"off the face, in the case" like Josh's eye doctor taught him and she just said"Okay, MOMMIE!"
As we went over the time since her surgery and how fortunate she is to have had such great medical care. At one point she incredulously said to my Dad and I "I almost died, I coulda died and I wouldn't even have known it!"

Thursday, March 11, 2010

Life goes on...

While trying to bring Andie up to date on current events my parents were quizzing her yesterday. When asked who the president is she said "Obrak, and He's not respectable!" Sometimes she comes out with sentences and phrases that have meaning but most times she just mixes her words all over the place. She is set to get the trach tube taken out next Thursday morning. That should make communication easier for her - easier for her to get the words out and hopefully the words will all start making more sense soon.

In other news: Since the weather's been nice ( in the high 50s) my boys have been able to play outside in the evenings when there's nothing else on their agenda. Josh is on this kick where he wants to be a goalie so he puts on pads and does stretches... and ruined a pair of sneakers by wearing holes in the toes. A few neighborhood girls came by the day before last and played with them in our driveway and then yesterday they waited and waited for them to come back again. At one point Dima came in and asked if we could call them to find out where they were. They didn't come back so the two of them played their own games of hockey until dinnertime.

Josh had a play date yesterday morning while a friend and I caught up on what's going on with each other. We let the kids play upstairs while we talked in their kitchen and other than one interruption to ask permission to have a piece of gum they did well. (Josh spit it back out as soon as the "juice" was out of it.) When we went upstairs to tell them it was time to go they had dressed up - she was in a princess gown and Josh had on a firefighter jacket - it was really cute. Well, I still had to get him back here and give him lunch before school and while he was eating I asked him about what went on while they were playing together. Then as we talked more he told me that they had smooched once on the lips cause they were pretending they were married! Oh, geeze!
Life goes on...

Tuesday, March 9, 2010

word salad

Things at Good Shepherd are moving right along. Andie's still talking in what a friend of hers called "word salad" what a great description it really fits because the sentences start out with one thing and end with another and there could be a little bit of anything tossed in there. She's still not getting her own birthday correct all the time but knew my dad's birthday today.

Since there's still not much meaningful communication from Andie I'd like to ask that if you do go to visit her get the big calendar in her room and write on it who was there and at what time so we can all refresh and help with rebuilding her short term memory. While you're there also discuss things like significant dates and maybe even things like which therapies she's had that day or which are still to come. There's also a blue "homework" folder from the speech therapy department that we can all use to go over things with her. I left a note book there too for longer notes about visits but don't know what happened to it. If she's struggling with a word you can offer her paper to write it down or sometimes if you remind her to slow down she'll try a different approach to get out what ever she's trying to say.

She is using a walker to get around now as opposed to the wheelchair and they're talking about taking the trach tube out as well. There was talk of her leaving GS in about two weeks, where she'll go after that is still up in the air - there's a meeting planned for this Friday for my parents to talk about that with a case manager.

Monday, March 8, 2010

Got the word from Dad today that Andie's catheter was removed again - hopefully for good this time. Apparently in the effort to communicate that it was removed there was some pantomime involved, then there was some confusion about exactly when it was taken out cause Andie said it was at three - today- but it was only noon when we were talking and it was already out. We have a calendar and lists of days of the week and months for Andie to use to get re-oriented as far as time. The brain injury mixes things up other than just the exchange of meaningful information.
She's getting meals in the dining room three times a day and the aides watch how much everyone eats and record it. If she doesn't get enough calories the old fashioned way they supplement it with some tube feeding. Dima has Ice hockey practice tonight so we're rushing now to get homework done, dinner eaten and then get him dressed. This is Chris's department but I've got to handle it tonight and I dread doing this stuff cause it's like mass confusion once you get into the rink with all the screaming kids, Josh could skate with the big kids but he also likes hanging out upstairs on the bleachers to watch.

Sunday, March 7, 2010

Andie, when you read this I hope we can laugh about it, but today when you left a message on Mom and Dad's answering machine it seemed kind of tragic that you know what you want to say and your tone and inflections are there but the words are all over the place. When we got home from church this morning (where Josh thought the communion bread was cheese and grabbed one, "good, I'm hungry"!!! Luckily Gramma brought him something to munch) the answering machine had a message that I should have written down to write it out here but we just thought you were wondering where we were.
While getting breakfast together you called - with the help of the aides - and were so upset that when Dad couldn't get the gist of what you wanted he gave the phone to me. Paper was a word that was used more than once so I asked if you wanted the newspaper... no, a notebook... no, you mentioned two of something there are two calendars in the room..... "OH LYN!!!" Okay, I'll get there as soon as I can - after we have our breakfast.... then we'll figure it out... again something about two of something... paper... that I have... crosswords? No, something I have - your contacts? YES - Eureka!
Tray and twelve are words that are used a lot and for different situations, but still the frustration of not being able to get your point across is obvious.

So, we had breakfast and I got her contacts and solution together and got into Good Shepherd. When we got there She was really, really upset and her glasses were held together by scotch tape. She was in OT at the time and the therapist and aide were both in the room gathering information about what made her so upset that she out and called one of the aides from yesterday a b-i-t-c-h even while knowing she shouldn't and looking in Josh's direction while whispering it. I calmed her a bit by assuring her that I brought the contacts but kept them out of sight since the doctor has to approve anything like that first.
The story is: Andie heard the AIDE yesterday talking about her - well, they do have to give each other updates about what they're getting into and since this AIDE was new to Andie's case she needed the full run-down. I've already noted that when she's talking Andie has this gossipy, head bobbing attitude with vocal inflections and tones about her if she's among people she's comfortable with - is this stuff so ingrained that it's just part of communication even when all else fails ? Anyway...
Well, Andie sensed that she was being TALKED ABOUT yeah, she was! - and got paranoid about that. Then, I'm just going to call this a personality conflict with the AIDE in question cause any time you mentioned the AIDE or events from the Saturday she got visibly upset.
I circulated among the aides and therapists that were there this afternoon and got the real story: It seems like after she felt slighted she would not comply with the normal bathing, changing into PJs schedule that the place tries to maintain. I've seen Andie take her own glasses off when she's ready to sleep and put them down next to her on the bed usually I - or the aides secure them once she puts them down. My guess is that she put them down then rolled on them while sleeping, but - I honestly can't tell what happened to the glasses. My parents are working on getting them fixed.
While trying to figure out how to get her glasses fixed we asked where she bought them she tried to draw a map for Dad but it's hard to know where to go if you have no initial point of reference. At first she seemed to say it was by the Giant then later said it was by the Weis market.
So the doctor came by after Andie was like " Where is he? ... get him moving?" and asked if Andie's ever had a corneal abrasion - and I don't know if she has, but I have and it really hurts - and because of risk of corneal abrasions if she forgets about taking out the contacts or if the nurses / aides can't get them out for her he ruled no contacts. Andie was visibly upset but the doc also explained that it should only be for the short term.
Bottom line was that once a different aide came on duty last night at 11:00 pm she was a no-nonsense type of person who told Andie "you will get washed, and you will get changed so you're not smelly" and she complied, that explains why Andie was trying to tell us that she smells while we were trying to decipher what she was saying this afternoon.
It's got to be tough for Andie to be trapped in her own mind in the sense that she has to really work to make the simplest requests known and also trapped on the 4th floor there at Good Shepherd while we can all walk away.

Saturday, March 6, 2010

When Josh and I got to Good Shepherd today we first greeted Poppy and Gramma in the parking garage - best to get the POPPY, MY BEST BUDDY !!! and I VUW MY GRAMMA!!! out of the way before we went inside the building. I'd prepared him for seeing the wheelchairs and walkers and things that go along with rehab and I told him that if he behaved well he'd earn some computer time later. Andie had apparently watched us come across from the parking garage and was waiting for us in the hallway upstairs when we got into the locked brain - trauma ward.
Well, Josh was not quite his normal self - I had warned him not to jump on Andie, and it could have been the thought of losing the computer but he was taken aback when we got close to her. Could have been the wheelchair, could have been the trach tube, even Andie with her limited - staggered words communicated that she thougth he was afraid of her. He was not mean, just standoffish - for him.
Once we settled in to the dining area Josh spent alot of time looking at his MotorTrend magazine - I brought it along to keep him quiet. Gramma and I also played Ispy with him while Andie did her daily session with the Speech therapist. In Speech therapy she's asked about things like how she feels, then they get down to her address, her phone number, our names and things like that to judge her short and long term memories . They test her daily to se how she's progressing - she's still struggling with most of the answers. Whether the issue is receptive or expressive or both it's hard to say. She can communicate but most of what we understand is within the context of what's going on or along with motions to get the point across. A few days ago she was trying to say something and even though the words didn't say it I knew she was wondering where her contacts were. I told her I had them at Mom and Dad's house and then she was okay with that so I know that's what she meant. Other times I have no idea what the point of what she wants to say is and try to go along with it to get more information but she gets frustrated and stops talking or gets a disgusted look and shrugs and then stops.
I've noticed that when we just kind of hang out - first I saw it with her friend Cindy then later when we just sit around that she gets this gossipy kind of look and tone of voice and even though it's gibberish she's got a whole she -did -this and they -did -that.... interspersed with unrelated words... conversation going on with whoever will listen. At those times I try my best to pay attention and get some clues as to how to respond but it's tough when the conversation is pretty much one sided.
We'll stop in tomorrow after church and brunch so hopefully Josh will connect more with Andie.

Thursday, March 4, 2010

Andie had a test today to see how she'd do swallowing and it seems like things are a GO for breakfast tomorrow, then if all goes well with that she can have solid meals. I'm sure she's going to appreciate that since I've been hiding any drinks I've had in there since she made a lunge for one of the aide's Mountain Dew last week. Even if I'd turn my back and have a swig of something she'd smack her lips and go "what are you doing over there?" Good Shepherd has a great set up where we can go to the cafeteria and order our food and have it delivered to the dining room on her floor so we can all eat together.
I asked at GS about taking Josh in for a visit and they are okay with it. Dima's already got a date with Chris's mom to buy an outfit for his first holy communion set for Saturday and a sleep over planned so I'm going to get Josh out for a trip to Allentown. On the way I'll explain to him about what he'll see, the wheel chairs, people doing their physical therapy and all that. Oh yeah, and that he can NOT jump on Andie! With his exuberance he has potential to be a big hit (the therapists are cute, young girls and he LOVES girls) but we will be sensitive to the people who might not appreciate all that noise and energy. My dad's prepared to haul him out of there if my mom and I want to stay around to visit and if Josh is a problem. Josh is already excited about visiting his "best buddy" - Poppy and is disappointed that we can only stay for one night. He was trying to negotiate for four nights.
Dad said that today Andie's cracking herself up at times - I can't wait til she can actually get the words out and we'll all be in on the jokes.

Wednesday, March 3, 2010

Andie was asleep wht I got to Good Shepherd this morning and when she woke her first sentence was "OH LYN, ... I HATE I HATE THIS... PLACE!" she went back to the rambling , seemingly unrelated words she's been using after that. In speech therapy the therapist was filling in an information sheet about her with Andie's help she was answering things like, where she lives, where she is now, why she's here and the good one was when she was asked about favorite pass times she said "MasterCard" as plain as day!
I spoke more with the doctor about why the catheter was put back in and pointed out that Andie seemed to always go along time before she had to "go". Apparently that's not related to what's happening now, they don't want to risk kidney issues from not expelling as much urine as she should. A nurse practitioner that travels around with the physician explained to Andie (she's still upset about the catheter being put back in and about not being allowed to leave there yet) that it's just back there temporarily and that even though everyone knows that she wants to leave here if she did she'd not get the intensive treatment that she does now and since the most recovery takes place in the first three months THIS is the place to be right now and it's for a relatively short time in the scheme of things.

There are times when she's frustrated and complains and doesn't want to go to therapy but once she gets in there she's usually attentive and tries what they ask. During PT she gets frustrated when trying to use the right arm and sometimes cries.

Two of the physical therapists came into her room this afternoon - they thought it was time for another therapy but were mistaken but as they walked in there was another lucid moment as Andie told them "You two just keep on walking!" and once they confirmed that she did NOT have therapy at that time she was like" GOOD!, see ya!".

Tuesday, March 2, 2010

NOT a good day

When I got to Good Shepherd this morning Andie was already in Speech therapy so I just sat in the back of the room and watched quietly while they were doing their thing. When they finished andie was weeping and just distraught - I thought over the lack of ability to communicate in speech. We moved on to Recreational Therapy and when we got going there on a SLOW game of Uno and then Connect Four, just kind of goofing around with the checkers. Once we got back to her room I found out about the cause of her misery. Her catheter was removed yesterday and the night did not go well lastnight - they monitor the status of her bladder and since the doctor didn't see what she wanted to last night she told Andie that the catheter would have to be put back in for two weeks.

Well, apparently that statement was what got her so upset but I'm not sure which part - that the tube was going back in or that she realized that she's going to be there for at least two more weeks. Actually we've been told it'll be more like 3 or 4 weeks. I was going by a she didn't ask - I didn't tell policy but today she also sat in on the meeting we had with the social worker and heard the truth and she's got to have a pretty good comprehension of what's going on since she got teary when that was mentioned. The wonderful social worker who's been the intermediary between Good Shepherd doctors / therapists and us has been great. When we were going to meet to discuss Andie's future treatment she invited Andie into the room and pointed out to her again and again that she is so much improved over last week that she's now able to be there for this kind of meeting. That was lost on Andie because she was so wrapped up in not being able to leave the place soon.

Conversation with her is still all over the place - starting a sentence and ending with another thought. Hard to explain but once you listen and watch her you can sometimes get the idea of what she's trying to say even though most of the time it's like listening to some new language.
She is her old expressive self most times and the therapists seem to really get a kick out of her and out of our interactions when Andie just kind of grins at me or when she's bopping her head around in her own conversation makeing all sorts of faces and talking with a gossipy tone.

She had several visitors today and I think it was a good thing so she didn't have to sit around dwelling on the negative things. At the end of the day she was tired and by 5:30 she was ready to get some sleep. I'm not sure how that bodes for rest overnight but hopefully she'll get decent rest so she'll continue to do well in her therapies. I remind her again and again that she needs to save her energy for the times she needs it in therapy, play their games and that's her ticket out of there she has been more attentive and not fighting going into the therapy "gym" like she was doing.

She was teary again as we got ready to leave and it's hard to leave her like that but still things are worlds apart from what they were two weeks ago when she was still at LVHC and just lying there. It's so much harder on her since she's now aware of what the realities of the present and her potential future are.

Monday, March 1, 2010

Andie's word use continues as well as the confusing strings of words she's putting together. Stuff like " I don't get - oh!" and other seemingly random sentences. She did say halleliua (sp?) when she managed to get an ace bandage off her foot - it was there to help her circulation. She's pretty determined when she does or doesn't want something and it's hard to slow her down when she's set her mind to doing something - she's powerful and strong when she wants to be and has to get a grip on that whole impluse control thing.

One of the therapists said that first thing this morning she said, "question... When will I get out of here? " quite coherently. Along with these times there are the odd sentences, then comes some frustration - she had a short nap this afternoon and two aides and I were in the room when she woke up and started getting up and was mad at me when she was telling me to give her something and none of us knew what she was talking about and she got more and more frustrated until we finally narrowed it down to her glasses.
When I asked about how to help her get her words to come out her doctor just said that we should all encourage her to use her voice and to remind her to slow down - sometimes the thoughts come quickly and they can't get them out when they're trying to talk quickly.
During PT she walked well in the hallway with a walker and tried - for the first time in therapy - and did well on some steps.
In OT she did some multi-colored pegs and when the therapist asked her to remove them she did them two at a time. They then had her search for numbers on a big board it and she was doing well at identifying numbers and at scanning to board in search of the correct numbers - both on the left and the right.
She had her first " recreational therapy" today - that means you go in and play games - it's not supposed to feel so therapy - like and not like they're doing these silly, simple little things that they build from in the other types of therapy. Today she got to play air hockey and did well using her right hand and paying attention to what was going on. The room for RT is open in the evenings and weekends so we've been given permission to go down there if we like during their non- treatment hours. They also have a stove in the room and her room mate told me about the steps she went through to make a can of soup. Hopefully they can incorporate Andie's love of recipes and baking into her therapy here.
Chris to relayed to Josh that Andie played air hockey today and he was like "cool, you mean like the olympic girls?"

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