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.
Thursday, February 4, 2010
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.
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!
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.
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.
Sunday, January 31, 2010
Andie update
I spent hours in Andie's room today. Most of the time she seemed out of it but when they brought down the sedation she opened her eyes, and moved around - her hands had been bound to stop the thrashing and grabbing at tubes - the nurse took the left one out of the restraints and said my parents and I could do that too but I didn't feel comfortable with that if he wasn't there. When the hand was free she was touching her face where it's swollen and was not too combative today that I saw. There was a tear in her eye and I wonder how much she realizes about what's going on.
More lists of to -dos and I carry my little notebook that comes out about half way into what the doc is saying since he seems to pop in and as he's talking I try to grasp it but know I should write it too so I can take it all in and remember and look stuff up later.
This doctor is fabulous. Ironically one of the women at my parent's church had an issue that was tended by him an few years ago. He indicated that since there was quite a bit of damage of Andie's temporal lobe but seemed pleased with her progress - even though it didn't seem like much to me... Talk of taking the breathing tube out but it was still there when I left and earlier there was mention of 3 - 5 days. Obviously, it's moment by moment stuff.
They say she can hear us and might not remember it later but I find it remarkable that she was more active today - alot while the pastor of my parent's church was visiting - and thought her eyes didn't really seem to focus I wonder if she saw us. My Dad thinks she tapped his palm - after I left and was driving home- and she does seem to respond to his voice as in getting more active... as much as a person can while hooked up to all kinds of lines and tubes and lying like that.
I'm home now and will chill here this evening and rest as much as possible and will decide about going back tomorrow or Tuesday once I've pondered all this.
Since I've applied for and gotten Dima's benefits and that kind of stuff is related to what I did when I had a paying job I should be the one to work out her insurance issues, Mom and Dad don't need more to think about. I do want to get back to Allentown to deal with that with the help of the hospital people. I've got files started that I left at Mom + Dad's about the hospital and Andie's mail so far with empty files remaining to be used as needed.
Again: DO NOT VISIT NOW she needs... above all... to rest and recover and most of you know how vain she is ...just don't go - when things have changed I'll let you know - I'll do my best to post nightly updates and we will call you - or at least I will - when we need extra hands.
The lack - of- job thing and car problems seem so trivial now!
Good Night. Guten Nacht. Buona Notte. Spakoina Noche
More lists of to -dos and I carry my little notebook that comes out about half way into what the doc is saying since he seems to pop in and as he's talking I try to grasp it but know I should write it too so I can take it all in and remember and look stuff up later.
This doctor is fabulous. Ironically one of the women at my parent's church had an issue that was tended by him an few years ago. He indicated that since there was quite a bit of damage of Andie's temporal lobe but seemed pleased with her progress - even though it didn't seem like much to me... Talk of taking the breathing tube out but it was still there when I left and earlier there was mention of 3 - 5 days. Obviously, it's moment by moment stuff.
They say she can hear us and might not remember it later but I find it remarkable that she was more active today - alot while the pastor of my parent's church was visiting - and thought her eyes didn't really seem to focus I wonder if she saw us. My Dad thinks she tapped his palm - after I left and was driving home- and she does seem to respond to his voice as in getting more active... as much as a person can while hooked up to all kinds of lines and tubes and lying like that.
I'm home now and will chill here this evening and rest as much as possible and will decide about going back tomorrow or Tuesday once I've pondered all this.
Since I've applied for and gotten Dima's benefits and that kind of stuff is related to what I did when I had a paying job I should be the one to work out her insurance issues, Mom and Dad don't need more to think about. I do want to get back to Allentown to deal with that with the help of the hospital people. I've got files started that I left at Mom + Dad's about the hospital and Andie's mail so far with empty files remaining to be used as needed.
Again: DO NOT VISIT NOW she needs... above all... to rest and recover and most of you know how vain she is ...just don't go - when things have changed I'll let you know - I'll do my best to post nightly updates and we will call you - or at least I will - when we need extra hands.
The lack - of- job thing and car problems seem so trivial now!
Good Night. Guten Nacht. Buona Notte. Spakoina Noche
Saturday, January 30, 2010
Andie's day
She's still sedated because each time they try to bring her out of it she gets combative and spikes her blood pressure and was bleeding from the incision site so back into Lulu Land she went ... they'll try to gently bring her back out of it during the night.
Doc was concerned about brain function last night since there were issues with her reflexes on her right side (the part of the brain that was necrotic and removed was on her left the Left Middle Cerebral Artery and therefore the area responsible for speech and movement on the right side of the body) so.... she's better today than last night since reflexes are there - the surgeon was a bit concerned about that last night but optimistic this morning. The doctor also said it was "big surgery" so it's going to take a while to recover.
My parents and I went to her apartment today got the mail and stuff like that and last night I was making lists of stuff to do well into the night and still trying to wrap my mind around the whole thing. At this point I'm planing on going home to Glenmoore tomorrow after some time at the hospital. I'll regroup there and then get back here.
Her surgeon is wonderful seems like a nice guy, great bedside manner, spent time answering our questions and has an amazing background:
http://www.lvhn.org/Careers/Physicians/Why_Im_a_Physician_at_Lehigh_Valley_Health_Network|879
For all who have asked about how to help: For now her blood pressure and comfort are key issues and they try to keep things calm in the Critical Care Unit so visitors need to be limited. I'm confident that her care is in good hands - in a few weeks when she comes home I'll let you know how day to day things will be once she's here at my Mom and Dad's - that 's when we'll need extra hands.
I really do feel the good vibes and the love from everyone - yesterday -even after going over the potential worst case scenario with the doc and after the stress of seeing her wheeled toward the OR and a few tears ... about an hour into the surgery I had a peaceful feeling and don't even know how to describe it.
still feels like a dream to me ....
Doc was concerned about brain function last night since there were issues with her reflexes on her right side (the part of the brain that was necrotic and removed was on her left the Left Middle Cerebral Artery and therefore the area responsible for speech and movement on the right side of the body) so.... she's better today than last night since reflexes are there - the surgeon was a bit concerned about that last night but optimistic this morning. The doctor also said it was "big surgery" so it's going to take a while to recover.
My parents and I went to her apartment today got the mail and stuff like that and last night I was making lists of stuff to do well into the night and still trying to wrap my mind around the whole thing. At this point I'm planing on going home to Glenmoore tomorrow after some time at the hospital. I'll regroup there and then get back here.
Her surgeon is wonderful seems like a nice guy, great bedside manner, spent time answering our questions and has an amazing background:
http://www.lvhn.org/Careers/Physicians/Why_Im_a_Physician_at_Lehigh_Valley_Health_Network|879
For all who have asked about how to help: For now her blood pressure and comfort are key issues and they try to keep things calm in the Critical Care Unit so visitors need to be limited. I'm confident that her care is in good hands - in a few weeks when she comes home I'll let you know how day to day things will be once she's here at my Mom and Dad's - that 's when we'll need extra hands.
I really do feel the good vibes and the love from everyone - yesterday -even after going over the potential worst case scenario with the doc and after the stress of seeing her wheeled toward the OR and a few tears ... about an hour into the surgery I had a peaceful feeling and don't even know how to describe it.
still feels like a dream to me ....
Thursday, January 7, 2010
Inky hands
If you see me walking around later today with ink on my fingers it's because I plan to go out to get fingerprinted this morning to get my application to the school district going. I got my college transcript last night via fax - COBOL in 1983??? - I really don't know why I thought that could be a good career path for me.
Anyway, just last night I submitted the application on line and want to get it moving I'm feeling energized and excited about going to work within the schools. For now I'd just like to substitute as needed so I can still be here with Josh before school most days, uh... so I don't have to pay for child care, then I'd like to move on to something more permanent once he's in first grade next year. It looks like they have some openings for substitute clerical / secretarial and I think my varied back ground at the front desks of the dental offices I worked in should have prepared me for that - let alone the paperwork involved in the adoption of our boys and now advocating for Dima and his AD/ HD Wrap Around benefits. I've been planning to get around to doing this at some point and now that Chris is here working on working I could technically leave Josh here with him to free me up to get to work but I'd still like to be flexible enough to free him up when he has an interview and once he's actually going to an office.
As far as the job search, he's still searching and making calls and poking around on corporate websites all day every day. He got a call from a friend yesterday who's been searching for 6 months (yikes!) who gave him information on what's worked to get him interviews and interest in his resume. Chris has had a few interviews with companies and with recruiters and hopefully one of them will lead to a job.
Since he's still looking, if anyone has any connections please forward the resume I sent out earlier - email me if you need me to send it again. Some of you out of towners have asked about the possibility of moving, actually Chris's former boss said he could work right now if we'd be willing to move to Chantilly, VA but I don't think we're at that point in the search yet. We'd like to stay close to the family we have around here. Not to say that six months from now our outlook won't change, just want to try to stay local if we can.
Now that I think about it do they even use ink for fingerprints anymore? The last time I did this was 2003 pre-adoption - maybe they have newer technology these days. Retinal scan? Finger scan? I guess I'll find out.
Anyway, just last night I submitted the application on line and want to get it moving I'm feeling energized and excited about going to work within the schools. For now I'd just like to substitute as needed so I can still be here with Josh before school most days, uh... so I don't have to pay for child care, then I'd like to move on to something more permanent once he's in first grade next year. It looks like they have some openings for substitute clerical / secretarial and I think my varied back ground at the front desks of the dental offices I worked in should have prepared me for that - let alone the paperwork involved in the adoption of our boys and now advocating for Dima and his AD/ HD Wrap Around benefits. I've been planning to get around to doing this at some point and now that Chris is here working on working I could technically leave Josh here with him to free me up to get to work but I'd still like to be flexible enough to free him up when he has an interview and once he's actually going to an office.
As far as the job search, he's still searching and making calls and poking around on corporate websites all day every day. He got a call from a friend yesterday who's been searching for 6 months (yikes!) who gave him information on what's worked to get him interviews and interest in his resume. Chris has had a few interviews with companies and with recruiters and hopefully one of them will lead to a job.
Since he's still looking, if anyone has any connections please forward the resume I sent out earlier - email me if you need me to send it again. Some of you out of towners have asked about the possibility of moving, actually Chris's former boss said he could work right now if we'd be willing to move to Chantilly, VA but I don't think we're at that point in the search yet. We'd like to stay close to the family we have around here. Not to say that six months from now our outlook won't change, just want to try to stay local if we can.
Now that I think about it do they even use ink for fingerprints anymore? The last time I did this was 2003 pre-adoption - maybe they have newer technology these days. Retinal scan? Finger scan? I guess I'll find out.
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