It's been so busy and so much has happened. Lara no longer has her pic line in. That is basically a line in her vein in her arms for emergency iv's. So no more venous drugs, or supplements! Lara no longer has to do her breathing treatments regularly. When it sounds like she may have some fluid in her lungs or just a little "phlegmy" they give her some of her breathing treatments that she can do on her own. No more nebulizer. Lara is making leaps and bounds in her therapy. Not literal leaps...well not yet. ;)
With Lara crying the day before about wanting to go to the Byrds for Thanksgiving, we all weren't sure about what to expect in terms of Lara's mood. She seems to be, well like any of us would be in her situation. Happy and joking like regular Lara one minute, then crying and wondering why her, the next. It was a good day. We all got some laughs in. She had a few moments of wanting to go home. But I can't blame her. It is hard for her to be there by herself. She called my mom a couple times in the night and then in the morning wanting her to come in.
Yesterday Lara had an echo gram. It's an ultra sound of the heart. Her heart rate has been high for awhile and they just wanted to make sure there was nothing wrong. Lara got pretty scared and called saying there was something wrong with her heart. Once she understood what was happening she said several times, "I just need someone to come with me because I won't remember what to tell Dad, and he is going to ask me." Got the results of that and everything is good. They have put Lara on some medication to help her focus and help a little with staying awake and alert during the day. Lara still struggles with some daily routine type things. Like she will argue with you until you believe it that dinner time is breakfast. She is pretty adamit about it. Or that for three days straight they have only fed her grilled cheese, tomato soup, and fries.
She has been making some late night or early morning phone calls. Sometimes not really making sense. She did call me last night to tell me they took her pic line out. There are no words to say what I had when I saw her picture lighting up my phone. After we hung up she texted me. A little punch to the stomach that it is just gibberish. "Highighii mode hidellkl" So I just wrote her back, "Thanks for texting me. The girls were happy they got to see you today. You really are doing great Lar. Little steps at a time." Not sure what she was wanting to tell me through the text, just hoping I was calming fears if there were any. (They seem to grow at night).
The hallucinations are still there, a little less than before. Again, when she is tired is when she seems to have more. She seems to have more fear. Today she cried to (and with) Lisa about her hair. She found her bald spot (that is still growing) plus her two shaved spots which she has been worried over from the beginning. Telling Lisa she has spent so long growing her hair out. She finally let it out tearfully, "I don't want to look like a cancer patient." Tomorrow the AMAZING James Harris (from Sugardaddy's Salon) is coming to see what magic he can work for her. Emotionally Lara is on a very bumpy ride.
Physically she is making strides. She had much more movement on her left side. So much so today in PT she could kick her leg up a little while seated. She also walked again a little ways. This time the therapist still helped on the left knee. It wants to buckle. But she was using her hip to get that left side going forward. OT and ST has her working on things like, math, telling time, playing games (rules of taking turns, concepts of the games) some things that I would never think of. Like "Lara, you are in a room with lots of seats all around you, it is dark, and you have popcorn, where are you?" "Movie theater," Lara answers.
Considering where Lara was physically this time last week she has made such huge success. She still has a very, very, long way to go. She is not only in a daily physical fight. Fighting to regain what she once had in her strength and abilities. She is also in an emotional fight. She questions daily why her, she trys to be a good person, it's not fair. My heart cringes when I hear her ask those questions. My prayer is one day she will see that through this experience God is using her. God is not finished with her yet.
Saturday, November 27, 2010
Wednesday, November 24, 2010
Go ahead and squeal and cry now.
We walked in and the first thing out of Lara's mouth is, "I walked today." Yes again, the squeal. We will address that in a second.
She had just come back from lunch, but instead of in her bed she was in her wheel chair. One of the things they work on with her is just her endurance of being up and awake and not sleeping all day. So while she is sitting there Lisa offers to brush her hair. She had been growing it out for her wedding so it is pretty long. Now remember she has two shaved spots on her head, one in the front on the left side where they had the drain, which is now stitches, and one in the back right where they put in her shunt. That one has stitches too, but is also kinda like a big bouncy ball under her scalp...not that it bounces, but that's about the size. Back to her hair. They put her shunt in a week ago this past Tuesday. Ever since that surgery when we brush her hair there was a lot coming out. Some, we thought was from the shaving for the shunt, and we knew some would come out just from stress and trauma. Yesterday Lara had mentioned cutting her hair. It hurts her to brush it and it gets tangled very, very bad. So she was thinking something kinda short, less to tangle. Lara has been concerned about her hair as I have mentioned before and we keep reassuring her that James, (James Harris from Sugardaddy's Salon in downtown Port Orchard who is AMAZING) can work his magic with anything and not to worry. Well today as Lisa is brushing her hair, she extracts the usual wad of hair and looks at me and points. So I go to the back of Lara...bald. She has a pretty big bald spot on the left side now (about the size of my fist). We didn't tell Lara. We didn't want her to worry more. So, that is something you all could be praying for. That for a moment in time Lara may not have hair, but that she doesn't let it crush her spirit for that moment. And James...get to work!
We only got to see Lara do PT today. Technically we aren't supposed to get to go upsairs to the gym. But we got to today, yay. They got her up there and put some shoes that they have and this long brace in the back of the shoe to help Lara on her left ankle so she doesn't roll it. Her therapist takes her to the hallway, parks her by the wall with a railing and tells her she is gonna show us how she walked this morning. I was so excited. The therapist helps Lara stand up and Lara is hanging on to the railing. Another therapist takes away her chair so she can't try to sit down. The therapist takes her left leg and moves it forward for her, Lara steps with her right. The therapist moves her left leg again, and Lara steps again with her right. It was awesome to see. Don't get me wrong. Today, Lara could not walk by herself. Yes, someone has to move her left side for her because she still can't move it. But just to see her up and out of that chair was like...well there is nothing I can really compare it too. I wanted to cry, squeal, yell how awesome she was, hug her, and then cry again. Lara in two sessions (she needs a break) walked almost the whole hallway. Between the morning session and the afternoon session of PT Lara walked about 45 feet. I KNOW, RIGHT? (you can squeal, cry and yell how awesome she is now). The last go round of walking she was tired. She doesn't always have the confidence she can do it. Even her right side is unstable, just from laying in bed for 3 weeks. So she gets scared she is going to fall. I am just proud that when she thought she couldn't do anymore, she pushed on for about 7 more steps...that's when the growing happens.
Then Lara got back in her chair and practiced wheeling herself down the hall with just her right foot and right hand. She did pretty well...kinda fast even. At one point she did start crying. Saying she wanted to get out of there and she wanted to go to thanksgiving at the Byrd's. Finally we had to tell her we would talk about that down stairs and now is time for PT. By the time we did get back down stairs and back in her room she was better emotionally.
On a way more personal note and I may get in trouble for this... but Lara used the actual toilet today too. With the help of two nurses she got in there, and they even closed the door some and just stood outside it until she was done. I know, some are thinking...why in the world would you share something like that. Here's why...she can balance enough to be left alone! (In basically a caged in toilet with all the bars they have around it.) Besides that, wouldn't you want a little celebration for your first time to sit on a toilet in 24 days?
She had just come back from lunch, but instead of in her bed she was in her wheel chair. One of the things they work on with her is just her endurance of being up and awake and not sleeping all day. So while she is sitting there Lisa offers to brush her hair. She had been growing it out for her wedding so it is pretty long. Now remember she has two shaved spots on her head, one in the front on the left side where they had the drain, which is now stitches, and one in the back right where they put in her shunt. That one has stitches too, but is also kinda like a big bouncy ball under her scalp...not that it bounces, but that's about the size. Back to her hair. They put her shunt in a week ago this past Tuesday. Ever since that surgery when we brush her hair there was a lot coming out. Some, we thought was from the shaving for the shunt, and we knew some would come out just from stress and trauma. Yesterday Lara had mentioned cutting her hair. It hurts her to brush it and it gets tangled very, very bad. So she was thinking something kinda short, less to tangle. Lara has been concerned about her hair as I have mentioned before and we keep reassuring her that James, (James Harris from Sugardaddy's Salon in downtown Port Orchard who is AMAZING) can work his magic with anything and not to worry. Well today as Lisa is brushing her hair, she extracts the usual wad of hair and looks at me and points. So I go to the back of Lara...bald. She has a pretty big bald spot on the left side now (about the size of my fist). We didn't tell Lara. We didn't want her to worry more. So, that is something you all could be praying for. That for a moment in time Lara may not have hair, but that she doesn't let it crush her spirit for that moment. And James...get to work!
We only got to see Lara do PT today. Technically we aren't supposed to get to go upsairs to the gym. But we got to today, yay. They got her up there and put some shoes that they have and this long brace in the back of the shoe to help Lara on her left ankle so she doesn't roll it. Her therapist takes her to the hallway, parks her by the wall with a railing and tells her she is gonna show us how she walked this morning. I was so excited. The therapist helps Lara stand up and Lara is hanging on to the railing. Another therapist takes away her chair so she can't try to sit down. The therapist takes her left leg and moves it forward for her, Lara steps with her right. The therapist moves her left leg again, and Lara steps again with her right. It was awesome to see. Don't get me wrong. Today, Lara could not walk by herself. Yes, someone has to move her left side for her because she still can't move it. But just to see her up and out of that chair was like...well there is nothing I can really compare it too. I wanted to cry, squeal, yell how awesome she was, hug her, and then cry again. Lara in two sessions (she needs a break) walked almost the whole hallway. Between the morning session and the afternoon session of PT Lara walked about 45 feet. I KNOW, RIGHT? (you can squeal, cry and yell how awesome she is now). The last go round of walking she was tired. She doesn't always have the confidence she can do it. Even her right side is unstable, just from laying in bed for 3 weeks. So she gets scared she is going to fall. I am just proud that when she thought she couldn't do anymore, she pushed on for about 7 more steps...that's when the growing happens.
Then Lara got back in her chair and practiced wheeling herself down the hall with just her right foot and right hand. She did pretty well...kinda fast even. At one point she did start crying. Saying she wanted to get out of there and she wanted to go to thanksgiving at the Byrd's. Finally we had to tell her we would talk about that down stairs and now is time for PT. By the time we did get back down stairs and back in her room she was better emotionally.
On a way more personal note and I may get in trouble for this... but Lara used the actual toilet today too. With the help of two nurses she got in there, and they even closed the door some and just stood outside it until she was done. I know, some are thinking...why in the world would you share something like that. Here's why...she can balance enough to be left alone! (In basically a caged in toilet with all the bars they have around it.) Besides that, wouldn't you want a little celebration for your first time to sit on a toilet in 24 days?
Tuesday, November 23, 2010
Getting back to center
Wow, what a difference a day makes. Not knowing when or even if (due to weather conditions) any of us would be able to make it into see Lara today, it was difficult leaving her last night. Especially now that she is getting to be more understanding of her situation and her sometimes emotional struggle with it made it even harder.
Today was a good day overall. It is so hard to get details in because so much happens in one day. Yesterday Lara had worked with PT on trying to sit balanced. Because her brain is not connected with her left side, basically when they sit her up, she just falls either back or to her left. Mom described it best as she is like moving oatmeal. The therapist had her in a seated position on the edge of the bed. The therapist is in front of her, I mean...almost on her, seated in a chair. I am standing behind her just in case I need to catch her. Lara has basically zero strength on her left side. So her right side overcompensates to find her center, and ends up pushing to the left. Well her left side can't push back so she falls over. (I hope that makes since). So now that Lara is positioned, the therapist has her prop herself with her right hand on the bed...so kind of leaning forward and to the right. Lara then has to go down on to her forearm and push herself up to center, without falling. A kind of push up of sorts. Sorry, but on those cushy beds, I think a few of us with weak abs would have a hard time doing that. You know the crazy thing was as she was doing it, it got easier and easier for her to find her "center". Then she was sitting. She looked like a rolled sack of potatoes, but sitting none the less! They worked a little while longer on some other balancing and don't get me wrong, she would lean and the therapist would tell her come back, you're leaning, but still classifies as sitting. She would pull herself back. Just getting her to recognize and find her balance on an unbalanced surface was a big deal.
Due to the road conditions we didn't get there until lunch time. Peeked in her room, no Lara. So we went down to the dinning hall. Can I tell you Lisa and I were FAR away. I mean, the other side of the room and still in the hallway just through the door. I waved. It's like peeking in on your little child on their first day of school. We had "perma-grin" you know when you smile so big and hard it hurts...and you can't stop. We waved and she saw us. I don't know exaclty how far, but we were "I wasn't expecting her to be able to see us" far. We are not supposed to go into the dinning hall while the patients are eating as visitors can be a distraction. So...I go in. :) I lean down by her shoulder, "Hey just wanted to tell you we're here and we will be waiting for you in your room until after lunch." Her face scrunches up, "Why, you can stay here." "Well, we aren't supposed to be in here. We don't want to distract you from focusing." Totally said for the nurses benefit that was standing right by me. "Oh, guess what I did today." "What?" "I stood up. And it was the scariest thing I've ever done in my life." What I wanted to do was squeal like a little school girl shaking my hands in the air with some jumping. But I refrained. "Lara, that is so awesome. I'm so proud of you." Gave her a little kiss on the forehead and told her we would be waiting in her room. Then walked over to Lisa to squeal with her. WOW.
We had the chance to see two of her sessions of therapy today. Her physical therapist said that because we weren't too distracting we could watch. Yay for good behavior! At one point she wheeled Lara out into the hallway. There are wide hand rails along all the walls. Using her right hand on the rail, a belt around her waist, and a quick pep talk from her therapist, the therapist then hoists her up. Lara stands for a little over 15 seconds. The therapist does have to help stabilize her legs. They are wobbley and weak, and she has to help her lock her left knee. But she did it. When Lara is all said and done with all of this in a year or two, maybe she will let me share the video. Lara then sat down and did it a second time...even longer. Wiped out! They wheeled her up to the gym upstairs. She met with the occupational therapist. They played connect four, worked on some vision field, (remember she can't see out of her left quadrant), then she sat on a bench and had to use her right hand to unscrew these screws and put them in a dish (more balancing while sitting). She was so tired.
It was a fun day. We got to laugh with her, she had a moment with Justin, she worked so hard she was tired, and she earned it. It's nice to have these good days, to balance out the not so good days. Brings US back to our center.
Today was a good day overall. It is so hard to get details in because so much happens in one day. Yesterday Lara had worked with PT on trying to sit balanced. Because her brain is not connected with her left side, basically when they sit her up, she just falls either back or to her left. Mom described it best as she is like moving oatmeal. The therapist had her in a seated position on the edge of the bed. The therapist is in front of her, I mean...almost on her, seated in a chair. I am standing behind her just in case I need to catch her. Lara has basically zero strength on her left side. So her right side overcompensates to find her center, and ends up pushing to the left. Well her left side can't push back so she falls over. (I hope that makes since). So now that Lara is positioned, the therapist has her prop herself with her right hand on the bed...so kind of leaning forward and to the right. Lara then has to go down on to her forearm and push herself up to center, without falling. A kind of push up of sorts. Sorry, but on those cushy beds, I think a few of us with weak abs would have a hard time doing that. You know the crazy thing was as she was doing it, it got easier and easier for her to find her "center". Then she was sitting. She looked like a rolled sack of potatoes, but sitting none the less! They worked a little while longer on some other balancing and don't get me wrong, she would lean and the therapist would tell her come back, you're leaning, but still classifies as sitting. She would pull herself back. Just getting her to recognize and find her balance on an unbalanced surface was a big deal.
Due to the road conditions we didn't get there until lunch time. Peeked in her room, no Lara. So we went down to the dinning hall. Can I tell you Lisa and I were FAR away. I mean, the other side of the room and still in the hallway just through the door. I waved. It's like peeking in on your little child on their first day of school. We had "perma-grin" you know when you smile so big and hard it hurts...and you can't stop. We waved and she saw us. I don't know exaclty how far, but we were "I wasn't expecting her to be able to see us" far. We are not supposed to go into the dinning hall while the patients are eating as visitors can be a distraction. So...I go in. :) I lean down by her shoulder, "Hey just wanted to tell you we're here and we will be waiting for you in your room until after lunch." Her face scrunches up, "Why, you can stay here." "Well, we aren't supposed to be in here. We don't want to distract you from focusing." Totally said for the nurses benefit that was standing right by me. "Oh, guess what I did today." "What?" "I stood up. And it was the scariest thing I've ever done in my life." What I wanted to do was squeal like a little school girl shaking my hands in the air with some jumping. But I refrained. "Lara, that is so awesome. I'm so proud of you." Gave her a little kiss on the forehead and told her we would be waiting in her room. Then walked over to Lisa to squeal with her. WOW.
We had the chance to see two of her sessions of therapy today. Her physical therapist said that because we weren't too distracting we could watch. Yay for good behavior! At one point she wheeled Lara out into the hallway. There are wide hand rails along all the walls. Using her right hand on the rail, a belt around her waist, and a quick pep talk from her therapist, the therapist then hoists her up. Lara stands for a little over 15 seconds. The therapist does have to help stabilize her legs. They are wobbley and weak, and she has to help her lock her left knee. But she did it. When Lara is all said and done with all of this in a year or two, maybe she will let me share the video. Lara then sat down and did it a second time...even longer. Wiped out! They wheeled her up to the gym upstairs. She met with the occupational therapist. They played connect four, worked on some vision field, (remember she can't see out of her left quadrant), then she sat on a bench and had to use her right hand to unscrew these screws and put them in a dish (more balancing while sitting). She was so tired.
It was a fun day. We got to laugh with her, she had a moment with Justin, she worked so hard she was tired, and she earned it. It's nice to have these good days, to balance out the not so good days. Brings US back to our center.
If God is for us, who can ever be against us?
Sorry about not posting yesterday. Our power went out and so no internet.
This new phase as I have said before means alot more work, and more independence for Lara. She is having to learn to do things for herself without help. Not just how to do it, but that she can. Washing your armpit one handed is kinda tricky. I know you're wondering how now that I have planted that visual. Lara has learned to take the wet wash cloth and fling out, catch it with her armpit, and drag it through. Who would have thought that up. Good thing Lara is here to learn stuff like that. I'm not that creative!
With the weather we had yesterday and getting worse into the night, (for those not in our area we had snow and ice and extreme low temperatures), it was a hard decision, but what a perfect opportunity for Lara to stay the night by herself.
During the day they did what they call a "light version" of her therapies. She had breakfast at 8 am, 8:45 speech therapy, 9:30 occupational therapy, 10:15 recreational therapy, 11:00 physical therapy, 12 lunch, 1:00 speech therapy, 1:45 physical therapy, 4:00 occupational therapy, 6:00 dinner. Now in between all of that are her meds, her breathing treatments, her doctor assessments, etc. So a very busy day. I think the proudest moment was during her second session of pt. She was so exhausted. Her therapist at one point asked her, "Are you getting tired Lara?" "Yeah..." "Do you want to lay down or do you want to keep working?" It takes Lara so long to answer the therapist adds, "I won't always give you that option, but since today is your first day if you want to lay down you can, or you can keep working. Which do you want to do?" "I want to keep working." Awesome. That right there is what is going to get her farther. So proud of her.
Last night was her first night without someone from the family staying with her. Not sure it was as hard on her as it was on all of us. With this weather and the road conditions, no one knew if we would be able to make it to the hospital in the morning. Definitely proud of her.
As I have said before Lara is much more aware of her situation. Heart wrenching moment of the day? She asked mom, "Mom, was there anything I could have done to prevent this from happening?" Mom reassured her, "Oh no Lara, this was nothing that you did or didn't do." Lara tearfully says, "It's just not fair. I try to be a good person and do what's right." Yeah, a little choked up on that one.
Praying that God can give her the peace in her heart and as she succeeds through each hurdle put before her she can realize God is with her and nothing can separate her from God's love. "If God is for us, who can ever be against us?" Romans 8:31.
This new phase as I have said before means alot more work, and more independence for Lara. She is having to learn to do things for herself without help. Not just how to do it, but that she can. Washing your armpit one handed is kinda tricky. I know you're wondering how now that I have planted that visual. Lara has learned to take the wet wash cloth and fling out, catch it with her armpit, and drag it through. Who would have thought that up. Good thing Lara is here to learn stuff like that. I'm not that creative!
With the weather we had yesterday and getting worse into the night, (for those not in our area we had snow and ice and extreme low temperatures), it was a hard decision, but what a perfect opportunity for Lara to stay the night by herself.
During the day they did what they call a "light version" of her therapies. She had breakfast at 8 am, 8:45 speech therapy, 9:30 occupational therapy, 10:15 recreational therapy, 11:00 physical therapy, 12 lunch, 1:00 speech therapy, 1:45 physical therapy, 4:00 occupational therapy, 6:00 dinner. Now in between all of that are her meds, her breathing treatments, her doctor assessments, etc. So a very busy day. I think the proudest moment was during her second session of pt. She was so exhausted. Her therapist at one point asked her, "Are you getting tired Lara?" "Yeah..." "Do you want to lay down or do you want to keep working?" It takes Lara so long to answer the therapist adds, "I won't always give you that option, but since today is your first day if you want to lay down you can, or you can keep working. Which do you want to do?" "I want to keep working." Awesome. That right there is what is going to get her farther. So proud of her.
Last night was her first night without someone from the family staying with her. Not sure it was as hard on her as it was on all of us. With this weather and the road conditions, no one knew if we would be able to make it to the hospital in the morning. Definitely proud of her.
As I have said before Lara is much more aware of her situation. Heart wrenching moment of the day? She asked mom, "Mom, was there anything I could have done to prevent this from happening?" Mom reassured her, "Oh no Lara, this was nothing that you did or didn't do." Lara tearfully says, "It's just not fair. I try to be a good person and do what's right." Yeah, a little choked up on that one.
Praying that God can give her the peace in her heart and as she succeeds through each hurdle put before her she can realize God is with her and nothing can separate her from God's love. "If God is for us, who can ever be against us?" Romans 8:31.
Sunday, November 21, 2010
99% vs 1%
I'm not sure if we are just getting to a tougher phase of this all, or if it is just me, but I am having a hard time gathering my thoughts today so bare with me! (And forgive all of the errors of the previous post! It was late.)
Last night Lara slept as well as one can with nurses coming in so often. Time for meds, time to change position (she is not able to roll over or push herself to her back), time to empty the catheter, time for an ekg... so every so often she is woken up. Not to mention two different sessions of her waking up and saying, "Lacy?" "Yeah, I'm right here Lara." "Okay" long pause..."I wanna go home." Of course I tell her some reassuring words. She had a few cute moments too. During the 1:30 am change she wanted to watch the news. I asked her if she was sure because it was 1:30 in the morning (trying to encourage more of the night/day activities that can get confused being in the hospital for three weeks.) I turned it on and it was all of the college football updates. Once the nurses were finished they told her they were leaving. She said "I just wanna hangout with my sister, we were playing football." I had to smile.
This morning was an "easy" version of what is to come. Only one session of OT and this afternoon was only one session of PT. She will be having 3 hours a day of just therapy. Split up into about 45 minutes each between three different focuses. Speech, occupational, and physical therapy.
It is hard to describe to people who haven't got to see her the reality of her true abilities. I try my best, and I try to be honest and detailed without too much gory detail, or soppy sad detail. Some people have wondered why Lara even needs one of us to be with her 24/7 or if that is more for us. "Us" meaning her fiance, parents, and siblings. From day one to today absolutely. There were times she was tearing out her own tubes...not great to pull out your drain in your head, or your catheter. There were times she was scared and needed some comfort for the moment because from moment to moment her knowledge changes, not just day to day. There were times that one of us could get her to do something that was in the moment vital to healing, that a nurse couldn't get her to do (ie eat, breathing treatments, or just even cooperating with the nurse). I'm not saying that we don't want to be there. We all want to be there all day if we could. There is so much information each day and it changes so quickly. Just even trying to keep the 6 of us current and up to date on the latest information is difficult.
Today Lara had two moments that in those moments I think she was starting to realize what her new reality might be. Do I think she gets that right now. No. The last neuro check I saw her do she told her doctor she was in Arby's. Perfect example of literally one second she is regular Lara, and the next second, she doesn't really get it. Today she was working with OT trying to wash up (which is difficult to do with only one hand, you have no balance of sitting, trying to hold your head up, and you have no left peripheral vision and it hurts to turn your head because of the big ole tube in the back of your head running down your neck). Her therapist was asking if she had gone to school and she said yes she was in school for dental assisting. I tried to give Lara some gentle encouragement without giving her answers or saying it for her (another thing for her AND us to be working on down here in rehab, we don't get to go behind her making better choices for her, answering for her, explaining for her), that she had graduated. "Well, Lara are you still in school," I asked. You could see her thinking. "You aren't in school any more, do you remember why?" "No." "Try to remember, think back to what you do remember and work your way through it." This was a few minutes. Her voice started to quiver, and the look of fear...almost starting to cry, "I can't remember." "You graduated. Remember?" "Oh yeah," her voice still trembling, but with relief, "I graduated." Another moment like that later in her bed about wanting to go home and be with her family. That quivering voice when she IS being the regular Lara just tears your heart out. In those moments, I had a glimpse of her maybe understanding in that second, what her NEW reality may be.
She did have some visitors come in who she has been asking for and hallucinating about for some time. Her little nieces. When her little three year old niece came around that bed to hold her hand I came up close and saw the tear roll down. Lara was smiling so big (well, one sided, today her left side of her checks and lips were not participating) it was a happy tear. It has been exactly three weeks since she has seen them. It felt good, for everybody.
Lara is now in rehab for sure another nine days. Depending on so many different factors, it could be four weeks in this rehab facility. Many of the staff the last two days have asked about living arrangements after her being discharged. So many variables being involved, not knowing when, what will her capabilities be, what will she still need help with, will she still have room for improvement, how rapidly is she making improvement, can she go to one of our homes, they mentioned maybe a group home, for how long....I could keep going, but that would just bore you and pop my ribs out. After seeing her two days in a row with what they are doing with her in OT, our reality is changing. Obviously this is a life changing event. For all of us. These next few weeks are filled with so many "IF's" that it is hard to not let your mind run with them...in all different directions. Especially when the nurses and doctors have told us a few times in the past two days to get some rest. You need to be rested and ready for when she is discharged. I think we are getting out of the "survival" mode and into...well I'm not sure what mode exactly, but easy is not apart of it at all. In fact, survival mode may be "easier". My vote is to wait and see. No since in worrying about something that may not even be an issue right? (99% of my brain keeps telling that 1% that.) Pray about these decisions we will be having to make for Lara and with Lara these up coming weeks. There will be some tough ones.
Ending on a much more fun note:
Lara during PT this afternoon moved herself a bit in a wheel chair. She used her right foot, and right hand and moved down the hall about 16 feet or so. Huge.
Last night Lara slept as well as one can with nurses coming in so often. Time for meds, time to change position (she is not able to roll over or push herself to her back), time to empty the catheter, time for an ekg... so every so often she is woken up. Not to mention two different sessions of her waking up and saying, "Lacy?" "Yeah, I'm right here Lara." "Okay" long pause..."I wanna go home." Of course I tell her some reassuring words. She had a few cute moments too. During the 1:30 am change she wanted to watch the news. I asked her if she was sure because it was 1:30 in the morning (trying to encourage more of the night/day activities that can get confused being in the hospital for three weeks.) I turned it on and it was all of the college football updates. Once the nurses were finished they told her they were leaving. She said "I just wanna hangout with my sister, we were playing football." I had to smile.
This morning was an "easy" version of what is to come. Only one session of OT and this afternoon was only one session of PT. She will be having 3 hours a day of just therapy. Split up into about 45 minutes each between three different focuses. Speech, occupational, and physical therapy.
It is hard to describe to people who haven't got to see her the reality of her true abilities. I try my best, and I try to be honest and detailed without too much gory detail, or soppy sad detail. Some people have wondered why Lara even needs one of us to be with her 24/7 or if that is more for us. "Us" meaning her fiance, parents, and siblings. From day one to today absolutely. There were times she was tearing out her own tubes...not great to pull out your drain in your head, or your catheter. There were times she was scared and needed some comfort for the moment because from moment to moment her knowledge changes, not just day to day. There were times that one of us could get her to do something that was in the moment vital to healing, that a nurse couldn't get her to do (ie eat, breathing treatments, or just even cooperating with the nurse). I'm not saying that we don't want to be there. We all want to be there all day if we could. There is so much information each day and it changes so quickly. Just even trying to keep the 6 of us current and up to date on the latest information is difficult.
Today Lara had two moments that in those moments I think she was starting to realize what her new reality might be. Do I think she gets that right now. No. The last neuro check I saw her do she told her doctor she was in Arby's. Perfect example of literally one second she is regular Lara, and the next second, she doesn't really get it. Today she was working with OT trying to wash up (which is difficult to do with only one hand, you have no balance of sitting, trying to hold your head up, and you have no left peripheral vision and it hurts to turn your head because of the big ole tube in the back of your head running down your neck). Her therapist was asking if she had gone to school and she said yes she was in school for dental assisting. I tried to give Lara some gentle encouragement without giving her answers or saying it for her (another thing for her AND us to be working on down here in rehab, we don't get to go behind her making better choices for her, answering for her, explaining for her), that she had graduated. "Well, Lara are you still in school," I asked. You could see her thinking. "You aren't in school any more, do you remember why?" "No." "Try to remember, think back to what you do remember and work your way through it." This was a few minutes. Her voice started to quiver, and the look of fear...almost starting to cry, "I can't remember." "You graduated. Remember?" "Oh yeah," her voice still trembling, but with relief, "I graduated." Another moment like that later in her bed about wanting to go home and be with her family. That quivering voice when she IS being the regular Lara just tears your heart out. In those moments, I had a glimpse of her maybe understanding in that second, what her NEW reality may be.
She did have some visitors come in who she has been asking for and hallucinating about for some time. Her little nieces. When her little three year old niece came around that bed to hold her hand I came up close and saw the tear roll down. Lara was smiling so big (well, one sided, today her left side of her checks and lips were not participating) it was a happy tear. It has been exactly three weeks since she has seen them. It felt good, for everybody.
Lara is now in rehab for sure another nine days. Depending on so many different factors, it could be four weeks in this rehab facility. Many of the staff the last two days have asked about living arrangements after her being discharged. So many variables being involved, not knowing when, what will her capabilities be, what will she still need help with, will she still have room for improvement, how rapidly is she making improvement, can she go to one of our homes, they mentioned maybe a group home, for how long....I could keep going, but that would just bore you and pop my ribs out. After seeing her two days in a row with what they are doing with her in OT, our reality is changing. Obviously this is a life changing event. For all of us. These next few weeks are filled with so many "IF's" that it is hard to not let your mind run with them...in all different directions. Especially when the nurses and doctors have told us a few times in the past two days to get some rest. You need to be rested and ready for when she is discharged. I think we are getting out of the "survival" mode and into...well I'm not sure what mode exactly, but easy is not apart of it at all. In fact, survival mode may be "easier". My vote is to wait and see. No since in worrying about something that may not even be an issue right? (99% of my brain keeps telling that 1% that.) Pray about these decisions we will be having to make for Lara and with Lara these up coming weeks. There will be some tough ones.
Ending on a much more fun note:
Lara during PT this afternoon moved herself a bit in a wheel chair. She used her right foot, and right hand and moved down the hall about 16 feet or so. Huge.
Saturday, November 20, 2010
Moving again?
What a day! We got news this morning about Lara's ct scan from last night. Her not feeling on her left side and not responding well to the neuro test was kind of disheartening. It is hard sometimes to stay faithful to what you truly believe will be when there are bumps along the way that make you question.
The doctor came in this morning saying he did see a hematoma (which is to be expected, oh, and that is basically like a bruise), and since Lara's brain was swollen, it is now slowly healing and the swelling is going down. So with that happening the blood that is there from the rupture (which caused the hematoma...or bruise) and her regular cranial fluids are moving and shifting. All of this to say, everything is ok. It will take some time but hopefully the "bruise" will completely heal.
So, phew. She's ok. She is so ok that she wiggled her left toes today! Dad was with her this morning and it is ever so slight of a wiggle. So much so that if you saw it, you might think you didn't see it. :) Yep, that is a confirmed wiggle people! She did it again tonight.
Lara is also officially admitted into rehab. Who knew you could be moved to the rehab floor, be in a rehab room, but NOT be in rehab? So we moved again a whole two doors down. NOW we are in rehab. What a crew! They mean business over here and we haven't even met the therapists yet. Everything is very structured and scheduled. (Like all things should be.) Lara will be having three different types of therapy, speech, occupational, and physical. Each morning she will get her schedule for the day at breakfast. Which by the way will not be in her room. All meals are eaten in the dinning hall with the other patients. Remember I said it is more nursing home style here. Of course for the first few days there will be extra watch on Lara since she can only use her right hand and has a limited field of vision. But no special treatment for her!
During the week her physical therapy will be "upstairs in the gym." (I just nodded like, "Well of course." Did anyone else know that hospitals had a gym floor?) You would think on the weekends they would do like us folks that live on the outside do. Relax, sleep in, drink a cup of coffee and read a great blog. Oh no. Up and at 'em and they just do their physical therapy around here. Hence the man in the open back gown and the red socks cruising with his walker with the tennis ball and the lady next to him yelling, "Heel, toe, heel , toe, heel..." and he really was cruising. Reminded me of some kind of speed walker with a walker.
Occupational therapy will also be coming. Well and doing occupational things! Washing, brushing, getting dressed getting undressed. Until you are in a situation like this you really don't think about alot of the things you do on a regular basis. You just grab the tooth past to put in on your toothbrush. Well watching Lara yesterday just pick witch item was the toothpaste to use it was an eye opener. It took so long just for her to figure out what tube or container was what, much less actually grabbing it to use it. Just that brain, vision, hand coordination thing has to be retrained for her.
Speech therapy won't just be working on her speech, but also swallowing and mouth movements. All three of these therapies will be happen twice a day for 45 minutes each time. I'm tired just thinking about it!
The doctor came in this morning saying he did see a hematoma (which is to be expected, oh, and that is basically like a bruise), and since Lara's brain was swollen, it is now slowly healing and the swelling is going down. So with that happening the blood that is there from the rupture (which caused the hematoma...or bruise) and her regular cranial fluids are moving and shifting. All of this to say, everything is ok. It will take some time but hopefully the "bruise" will completely heal.
So, phew. She's ok. She is so ok that she wiggled her left toes today! Dad was with her this morning and it is ever so slight of a wiggle. So much so that if you saw it, you might think you didn't see it. :) Yep, that is a confirmed wiggle people! She did it again tonight.
Lara is also officially admitted into rehab. Who knew you could be moved to the rehab floor, be in a rehab room, but NOT be in rehab? So we moved again a whole two doors down. NOW we are in rehab. What a crew! They mean business over here and we haven't even met the therapists yet. Everything is very structured and scheduled. (Like all things should be.) Lara will be having three different types of therapy, speech, occupational, and physical. Each morning she will get her schedule for the day at breakfast. Which by the way will not be in her room. All meals are eaten in the dinning hall with the other patients. Remember I said it is more nursing home style here. Of course for the first few days there will be extra watch on Lara since she can only use her right hand and has a limited field of vision. But no special treatment for her!
During the week her physical therapy will be "upstairs in the gym." (I just nodded like, "Well of course." Did anyone else know that hospitals had a gym floor?) You would think on the weekends they would do like us folks that live on the outside do. Relax, sleep in, drink a cup of coffee and read a great blog. Oh no. Up and at 'em and they just do their physical therapy around here. Hence the man in the open back gown and the red socks cruising with his walker with the tennis ball and the lady next to him yelling, "Heel, toe, heel , toe, heel..." and he really was cruising. Reminded me of some kind of speed walker with a walker.
Occupational therapy will also be coming. Well and doing occupational things! Washing, brushing, getting dressed getting undressed. Until you are in a situation like this you really don't think about alot of the things you do on a regular basis. You just grab the tooth past to put in on your toothbrush. Well watching Lara yesterday just pick witch item was the toothpaste to use it was an eye opener. It took so long just for her to figure out what tube or container was what, much less actually grabbing it to use it. Just that brain, vision, hand coordination thing has to be retrained for her.
Speech therapy won't just be working on her speech, but also swallowing and mouth movements. All three of these therapies will be happen twice a day for 45 minutes each time. I'm tired just thinking about it!
Friday, November 19, 2010
The not fun part of the roller coaster ride
Today was kind of a hard day. That part of the roller coaster you don't like (you pick that part the up on the ride or the down which ever part you hate). Lara had gotten so weak that she could hardly hold her head up. The weakest she has been since she's been here.
For breakfast she sat and ate not even a quarter of her food. Dr. Wang came in and explained to her that she is now at the phase of care where she has to do all the work. Not having any IV's she needs to be eating more and sometimes getting her to do that can be a challenge. Dr. Wang was not too happy about how weak she was and the fact that she couldn't hold her own head up. She hasn't gotten much movement in since the shunt surgery either. Before that surgery on her left side there was some movement. Remember she even shuffled her feet with a walker and the help of three other people.
After a good rest she sat in a wheel chair with no head rest and struggled holding her head up. We had to keep reminding her because she would just let it flop back. She ate pretty good at lunch. While in the wheel chair OT came. She did some exercises then she helped with her right hand and foot to get herself over to a sink in her room to brush teeth and wash her face. All of this sounds so simple, but let me tell you it was a process. It took a little over a half hour just to do that, the wheeling over, brushing and washing. The therapist definitely made her work for it. Her left side is so weak. She doesn't like to turn her head to the left. She can't see very well out of her left eye. Since Tuesday when the shunt was put in she has no use of her left side, leg, foot, arm, or hand.
She is getting pretty frustrated about not being able to get up on her own when she wants to. Just wanting to take a shower and go the bathroom when she wants and needs. (And let's be honest don't we all?)
She didn't eat much at dinner. Her stomach had been hurting pretty bad and progressively getting worse through out the night. Finally they ordered an x-ray and a bladder ultra sound. As the nurse was doing her neuro check and she wasn't passing. Before this test (but since the shunt surgery) Lara has had sensation on her left side. She could still feel us touching her. This time no. So much so that at one point I had taken a butter knife to the bottom of her foot (in a loving sister gonna hurt you because I love you sorta way) and still nothing. Mom and I had noticed her foot was a little swollen (just assumed from not much movement and circulation) so we did some of her passive stretches and some exercises. No feeling in her hand either. Lisa did do a little pinch test on her inner thigh. She felt that and I made sure to tell her that it was Lisa that did that.
The nurse wasn't feeling great about her responses so down she goes for a ct scan. This time (well every time but REALLY this time) was kind of nerve racking. She has come back now. She was done with her catheter (for the second time) but again, her bladder doesn't seem to want to release. Getting kinda lazy. So maybe that was some of her pain her half liter of urine that she can't seem to release on her own. We will know more when the x-ray comes back.
She's been back in her room about an hour and she is sawing some logs. The nurses said if it was an emergency we would know sooner or if not we may not know the results of the ct scan and the x-ray until tomorrow. Wish I had more information for you all. But now you have to wait. (Yeah, I don't like waiting either.)
For breakfast she sat and ate not even a quarter of her food. Dr. Wang came in and explained to her that she is now at the phase of care where she has to do all the work. Not having any IV's she needs to be eating more and sometimes getting her to do that can be a challenge. Dr. Wang was not too happy about how weak she was and the fact that she couldn't hold her own head up. She hasn't gotten much movement in since the shunt surgery either. Before that surgery on her left side there was some movement. Remember she even shuffled her feet with a walker and the help of three other people.
After a good rest she sat in a wheel chair with no head rest and struggled holding her head up. We had to keep reminding her because she would just let it flop back. She ate pretty good at lunch. While in the wheel chair OT came. She did some exercises then she helped with her right hand and foot to get herself over to a sink in her room to brush teeth and wash her face. All of this sounds so simple, but let me tell you it was a process. It took a little over a half hour just to do that, the wheeling over, brushing and washing. The therapist definitely made her work for it. Her left side is so weak. She doesn't like to turn her head to the left. She can't see very well out of her left eye. Since Tuesday when the shunt was put in she has no use of her left side, leg, foot, arm, or hand.
She is getting pretty frustrated about not being able to get up on her own when she wants to. Just wanting to take a shower and go the bathroom when she wants and needs. (And let's be honest don't we all?)
She didn't eat much at dinner. Her stomach had been hurting pretty bad and progressively getting worse through out the night. Finally they ordered an x-ray and a bladder ultra sound. As the nurse was doing her neuro check and she wasn't passing. Before this test (but since the shunt surgery) Lara has had sensation on her left side. She could still feel us touching her. This time no. So much so that at one point I had taken a butter knife to the bottom of her foot (in a loving sister gonna hurt you because I love you sorta way) and still nothing. Mom and I had noticed her foot was a little swollen (just assumed from not much movement and circulation) so we did some of her passive stretches and some exercises. No feeling in her hand either. Lisa did do a little pinch test on her inner thigh. She felt that and I made sure to tell her that it was Lisa that did that.
The nurse wasn't feeling great about her responses so down she goes for a ct scan. This time (well every time but REALLY this time) was kind of nerve racking. She has come back now. She was done with her catheter (for the second time) but again, her bladder doesn't seem to want to release. Getting kinda lazy. So maybe that was some of her pain her half liter of urine that she can't seem to release on her own. We will know more when the x-ray comes back.
She's been back in her room about an hour and she is sawing some logs. The nurses said if it was an emergency we would know sooner or if not we may not know the results of the ct scan and the x-ray until tomorrow. Wish I had more information for you all. But now you have to wait. (Yeah, I don't like waiting either.)
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