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.
Friday, February 26, 2010
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.
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.
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.
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.
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.
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
Good Shepherd Brain Trauma
Good Shepherd history
Where she started this whole thing Lehigh Valley Hospital
Her doctor there Dr. Li
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