Sweetest Smile

Tonight was a lovely visit with Sam. When I arrived, she was sleeping. I kissed her gently on her cheek and told her I was there and would sit with her for a little bit. With her eyes still closed, she gave me the sweetest Sam smile that just melted my heart. After a little bit, Sam opened her eyes and looked right at me and we just started talking quietly for awhile. Neither one of us said much, but it was truly lovely. She asked about our cats and said she was worried about me. I liked hearing that she was worried about me, mainly because it meant that she was becoming more aware of things. After a while, she asked me when I was going to get some sleep, and I got the gentle hint..... I asked her if she was going to bed the minute I left and she said yes. I said goodnight soon afterwards and kissed her again on her cheek.

First Meal Together

Today, Sam was really doing well. She was very clear in her speech and her voice is definitely getting stronger. The most exciting moment of the day came when the nurse brought in Sam's lunch. I have not seen her eat since November 14th, 2008. I thought too , that I would need to help feed Sam, but to my great surprise, Sam just picked up the spoon by herself and starting eating. She asked if I wanted to try some, and so I thought why not. The food was actually really good. She had pureed chicken with a little sauce, an asparagus and pea mixture and then grits (I think). Wendy and Aileen happened to arrive at lunch time and they had brought me a sandwich. Together, Sam and I for the first time in our "new" lives together, had lunch. It was really nice. It also was great to see Sam's huge appetite and I am sure it won't be long before the feeding tube is removed. Also, today was special for a different reason. Sam seemed to be a little more "there". Hard to describe it exactly, except that she was definitely thinking about lots of things and trying to ask lots of complicated questions. It gave me a renewed glimmer of hope, since it seemed like a slight shift had occurred. There are still the moments of course, when the nurse takes Sam out of the room for about 5 minutes and then when she returns, Sam thinks that we have all just arrived and is not aware that we had been together with her for the past few hours. It is this short term, as well as her long-term memory that is the focus of much of her therapies and of course the main reason she is at the facility. But there was definitely hope today, a slight shift forward in a long and uncertain road towards recovery.

Just a little sedation.....

Tonight Sam was wide awake, alert, speaking clearly at times and very animated. I brought her a large stuffed animal (actually a fish) to fidget with, since its better than her fidgeting with her feeding tube. She loved it and played with it all evening. The nurse said that she is becoming a handful and she has to keep her eye on her now, not just the fidgeting, but because she is moving around so much, They are barricading her into the bed with pillows all around her and large strips of foam, so she doesn't try to "jump" out and hurt herself...not that she could do that at the moment. All and all it is actually a good sign, but one more thing to worry about. When I was leaving, the medication nurse asked if she was sleeping, and I told her no...wide awake. She was concerned about her trying to pull out the feeding tube again, so she thought for a moment and then said "I know how to get her to rest and pointed to her rolling cart of medicine...I have it right here...just a little sedation...." I suppose it's not a bad idea, as it is much better than being in the emergency room at the hospital in the middle of the night. I'm hoping Sam is sleeping now and wish I too could have just a little sedation.....

Go Sam

When I arrived at the Facility this evening, Liat, Sam's speech therapist ran up to me on her way out to tell me how well Sam was doing, and that she has been less distracted in therapy. She said that after this week of pureed lunches, if all goes well, they will have Sam eating pureed breakfast, lunch and dinners starting next week. She told me not to worry, that "we'll get her there"...meaning onto solid food. I was very pleased and happy that Liat was so enthusiastic. Go Sam.

Lunch-time

As of today, Sam is now officially having "lunch" everyday in the diningroom. Lunch is all pureed food, but it's a very good start. The speech/swallowing therapist is pushing Sam, since on Sunday night, once again, she pulled out her feeding tube and needed to be sent back to the Emergency Room of the Hospital. She ended up spending over 13 hours there in total. I arrived very early morning and was quite amazed at how long it took to get transport back to the facility. I believe that if I had been there initially when Sam had been checked into the Hospital, the time frame of her visit would have been significantly shortened. Since there was no advocate for Sam when she arrived, and she can't talk for herself, I believe they were in no rush to assist. I am shocked that the facility sends brain injured individuals essentially on their own to the emergency room, without anyone from the facility to accompany them, but I must be imagining a different world, i.e. where things make sense. I did have a number of long talks with people once back at the facility as to how best to prevent this from ever happening again, but, I believe that until she is eating regular food and the feeding tube can come out, Sam and I may unfortuantely get to know Flushing Hospital very well.

Saturday Visit

Some days for Sam are better than others, but more often than not, it is during the course of a single day that both ups and downs take place. This is true for me as well. The emotions are intensified too in such a short period of time. Sam was quite calm yesterday and a bit tired from the previous nights activities, although she needed to be reminded of what had happened. Wendy and Aileen visited her early on during the day and I overlapped with them just a bit. When Sam and I were by ourselves, I showed her some pictures from past trips we had taken together. She liked the pictures alot, and vaguely at times would know a location, but mostly had to be reminded of where/when, the pictures had been taken, etc. This is not unusual but my emotions got to me yesterday just a bit. When I got myself together, I told her how much I loved her and that the love we share with each other is very special. She was looking at me quite intensely as I said this to her and then, after a pause, she said in the loudest voice I have ever heard her use, "yes it is"...."yes it is". What struck me about this, besides from her voice echoing out into the hallway for the first time, was that she had used a particular gesture too when she said those words to me which I have not seen in a very long time. It was the way in which she moved her head down slowly and leaned in to speak with me that was striking. It was a gesture that she use to use in the past when she was well and wanted to get a point across. It was a true "Sam" gesture and her being at her most sincere. That was a wonderful moment, as I long for such glimpses of the "old" Sam, as the "new" Sam slowly unfolds. Later on in the afternoon, I found a good Jazz station on the radio and Sam responded immediately. She was moving her head to the rhythms and even her hands were playing some of the instruments. Sam has always loved Jazz so when I asked her if she liked the music, she said yes, it made her feel (she took her time trying to find the right word)...comfortable. We both listened in this way for about an hour until the nurse came in to put Sam into bed. Instead of using the "lift" as it is called, the nurse asked for my help and together, we pulled Sam to her feet, did a pioret, and then put her into bed. Sam had stood for just a moment (with our help), but the three of us seemed to recognize this tiny accomplishment. When I said goodnight to Sam and told her I'd see her in the morning, she then surprised me once again and asked me "what time will you be here tomorrow?" I was shocked to hear such a question from Sam since first, it is very hard for her to put together such a long sentence, especially at the end of the day, and then it was such a "normal" statement. Would she really know tomorrow if I arrive at the time I say I will? I told her that I'd see her at 11:00 am tomorrow and then we waved goodnight.

Friday Night Surprise

On my way to visit Sam last evening, I recieved a phone call from the nursing station at Park Terrace informing me that Sam had pulled out her feeding tube and so they were preparing to send her to Flushing Hospital's Emergency Room for what is called a a peg replacement. I asked that they have the ambulance wait until I got there, so I could go over with her. In the Past, when Sam was in the hospital, she had pulled out her feeding tube twice and it was a bit of a procedure for them to replace. I knew all the details though, and so when I got to Park Terrace and asked them if they had simply tried to put it back in before everything closed -up. They looked at me kinda funny and said we don't do that here, we are not a hospital. Alas, I almost wanted to do it myself, so as to avoid Sam needing to go through a"minor" procedure" but knew I wouldn't be allowed. Sam was wide awake and in an agitated state. She needed to be playing with something all evening so I brought along some cloths and other textural items for her to the hospital. When we arrived at the emergency room, I could not believe the amount of people waiting there. Although very organized, the paramedics, Sam and I had to wait in a long line to "check in". Apparently two hospitals in the area had been closed down over the last few months and so Flushing Hospital was it for the whole community. A very sad state of affairs for our health care system, to say the least. The people in the hospital however were very efficient, and Sam got looked at immediately. Within a half-hour of checking in, the doctor was able to quickly replace the peg because....as I had thought, the hole had not yet closed up, so therefore no extended procedure was necessary. They did do a quick X-ray to make sure all was located in the right place, and so it was. We then waited about another 3-1/2 hours in a hallway (with 5 other patients), for proper transport back to Park Terrace and returned around 1:00 am in the morning. What was hard for me, besides the obvious, was that Sam really appears "normal" and so when everyone approaches her, doctors, nurses, X-ray technicians, etc. they all start speaking to her normally and then would whisper to me when she didn't respond, or would say something that didn't make any sense....what's wrong with her? I would just say...brain injury...but most people however wanted to know more.....why, how did it happen, etc. since she is so young as they would tell me. The last attending nurse we saw at the hospital, asked how long she had been in rehab., and then looked at her and said....she's going to do very well, I can tell, I can see it in her eyes. Thank god for the nurses who keep hope alive, and who seem to be the backbone of every hospital and facility I've been in over the last 4/5 months.

Evening Visit

It was late when I arrived tonight and I found Sam in bed with her glasses on reading a book. When I got closer, I realized that the book she was reading was upside down. Sam however seemed perfectly content. She was as always, happy to see me and we tried to talk for awhile, but most of her words were not making sense. This happens at night sometimes, as it takes a lot of energy for Sam to speak. During the day she tends to do better and then naturally gets tired latter on in the evening. When it came time for me to say goodnight, she started to cry. She said a lot that I could not understand, but one thing she said I could "I thank god you're here". This is not a typical Sam statement, but it is a loving one. I told her that I felt the same way and that I thank god that she is here with me too.... everyday.

Family Planning Day

Today was family planning day at Park Terrace. It is the day that the whole team of therapists get together with Sam's loved ones and tell us how she's doing, how they have been working with her and what their goals are for her. Wendy joined me as part of Sam's extended family and together we met the physical therapist, occupational therapist, speech therapist, recreational therapist, nutritionist, cognitive therapist and some of the head nurses as well as the social worker. We learned that the speech therapist had started feeding her some small portions of pureed food and applesauce last week and that she was swallowing well. Sam sometimes though can become quite distracted and when that happens she can't swallow, but otherwise she was doing okay. The other therapists also had experienced the same issues with Sam, i.e. that she becomes distracted easily and then can't focus on the therapy. However, over time, they have already seen some improvements and hope that it will continue to change. Her physical therapist is now just dealing with her trunk strength. As soon as she gets stronger, she will work with her on standing and then walking. The occupational therapist is focused just on some simple tasks at the moment like combing ones hair and washing ones face and the cognitive therapists deals with people in groups and tries to have them look at pictures, current events, etc. The recreational therapists stayed with us after the meeting to find out all of Sam's interests, and I must say it was hard to describe them all. I was really pleased with the team and to know that they are really concerned with getting to know Sam and helping her. After the meeting, we went to try to find Sam who was in between therapies in the hallway. She was sad today and very tired and told me a couple of times that ...she needs to take things slow.... I assured her that she could take things as slow as she needed and thanked her for reminding me that I too needed to slow down. I was reminded of what one of the therapists had said earlier... that when the patients start to improve they actually get worse...meaning that when they become more aware of their situation and surroundings, understandably they start becoming more upset, troubled, etc. I think Sam is starting to improve.

Disco Sunday

Today I came prepared for Disco Sunday by bringing a CD of the B52"s. Wendy, Aileen and I use the term "disco" loosely to mean anything that is fun, lively and for which we can dance to. When I arrived, Sam was watching the Sunday morning talk shows on T.V. She seemed to really be taking it all in. I told her that Bush/Cheney were no longer in the White House and that Barack Obama is our new president. She smiled and did two thumbs-up. I also asked her if she knew that Hiliary Clinton had been appointed Secretary of State and she said "I had heard that". I think she "had heard" that from me, from the many times over the last few months that I had mentioned it to her, but perhaps now, she had just been able to recall it. She also wanted to know how my work was going, which was the first time she had asked such a question.

When Wendy arrived, we decided to ask Sam to read to us. We gave her the book I had brought in for her from yesterday and Sam was simply fantastic. She focused on the words and tried to pronounce everything carefully from the start. We were impressed by her being able to differentiate between the words "Nice" - for the city in France and "nice" meaning good, etc. She did the pronunciations perfectly. There were words she could not quite understand, but she tried to pronounce them anyway. Sometimes she would stop speaking, but you could tell she was still reading...and then we would both say "Sam...we can't hear you, speak up". Sam also enjoyed looking at the pictures and we talked with her about them as we went page by page. Towards the end of the book, I was really tired, and thought Sam would be too, so suggested that we take a break before finishing the book. Sam did not want to. I suggested it again (projecting of course onto Sam), and suggested we listen to some music. I put the CD on, but Sam was still focused on the book. I then realized that it was Sam who was always the one who was extremely persistent, focused and ready to conquer anything that came her way. I shut the music off and had Sam carefully finish reading the book to us. Although Sam was tired, and her voice was too low to understand, we kept asking her to speak up - which she did. After finishing the book, we then put the music back on, and started playing with the Beach ball. Sam threw her hands up to catch the ball and threw it back to us for a while. It wasn't the usual dancing Disco Sunday, but is was an impressive day for sure.

Love

For the second day in a row Sam was doing well. Her speech was clear for most of the day and my sister and I were able to converse with her a bit. I had brought Sam a fun book to look at called Max Makes a Million, about a dog who is a poet who goes off to Paris. The book is wonderfully illustrated by Maria Kalman and it is also a love story. Sam and I used to read the book to each other early on, when we had first met. It covered our mutual interests back then which was simply, art and love. Sam was able to read the front cover of the book and then got caught up with the great illustrations. My sister Sheryl, who had not seen Sam for a little over two weeks was stunned by her progress and all of the positive changes. That was good to hear. After my sister left, Sam and I spent another few hours together. When it came time to say goodnight, Sam and I kissed and then I noticed that Sam had begun to cry. I told her that it was alright to feel so sad, and that it was a pretty screwed up situation. She took my hand and brought it up to her lips to kiss, and then proceeded to kiss every finger on my hand. She then proceeded to my other hand and did the same. At this point of course, I too was crying. She then started to tell me that "the reason I love you so much is cause......." I could not make out the last part of her sentence, but I didn't need to. At that moment love had blanketed the room and nothing else mattered.

Call for Cards

Tonight was a good night for Sam in contrast to the last couple of nights when I had visited and had not been able to understand most of what she was saying. I had begun to worry that she was somehow regressing. But tonight when I arrived, she began talking in a clear voice that was easily understandable and she managed to continue that way for about an hour before she got tired. Also, someone had mailed her a card at the facility, and so we opened it together. The note to Sam filled the enire inside of both sides of the card, and so of course I asked her if she could read it to me.....and she did! She managed to read the entire card. She also then studied the card itself, looked really carefully at the front and back of the card, and seemed very pleased with the natural images on the card. I even think she recogonized that the card was from the Metropolitan Museum, but can't be 100% sure. What I do know is that Sam seems to love receiving these personal cards and notes from people and now that she can even read them fully herself they are even more exciting for her. Therefore, I encourage anyone reading this blog at the moment, to send Sam a card directly at the facility (address is located on the right hand side of this blog). The notes and cards are very special to Sam and she was excited to see who the card was from, to open it up and actually read it. It took her a while before she let go of the card and allowed me to place it on her nightstand. She wanted to hold onto it just a little bit longer.

first camera club meeting

A blog from Wendy....

I got off the elevator, looked to my right and waited for Sam to turn her head to catch my eye and she did and gave that "Sam" smile of recognition. Well that made my day!!! I hadn't seen Sam since they removed the trache on Monday. She looks fantastic and um ....  like Sam!!  But I have to remind myself that she still has a very long road ahead. Finally removing the trache was just another  piece of the puzzle and another check on the checklist! And something several months ago many thought impossible.   She's incredible. I had just arrived between her therapy sessions-physical therapy,  still cannot walk, occupational and cognitive therapy, to relearn to read, write , regain memory and relearn every day tasks that we take for granted. So we visited for half an hour before they whisked her away for speech therapy. 

I wanted to wait around so i could spend some more time with Sam so I plopped myself down on her newly made up bed, read the newspaper and watched some tv. All of a sudden one of the nurses poked his head in and yelled, "Sam, what the heck is going on"?  When he realized that i wasn't Sam, he burst out laughing and told me i almost gave him a heart attack.  He called some of the other nurses over to have a chuckle over his surprise.

When I wheeled Sam back to the room an hour later, I told her the story and she laughed. 

Before Sam's shocker four months ago Sam and I joked but were kinda serious  about having a camera club. Okay so the club was just me and Sam. But we thought it would be fun to once and awhile do something camera-ee and take photos together.  I told her she had to be president but she just really wanted to be in  charge of making our official hats. We never really had our first camera club meeting cause after talking about it off and on for a year or TWO,  the conversation would always dissolve into a discussion of what kind of uniform we would wear for our  meetings. Well Sam, I finally got you and today was our first official camera club meeting.  I brought my camera today for my visit. I wanted Sam to hold a camera again. Sam's second love ( Marcie of course being her first)  is taking pictures.  It took Sam a little bit to coordinate holding the camera correctly. I showed her where the shutter was. She studied it intensely and when ready, took that picture of me below.  I guess I was ready for my close up!!

Our first camera club meeting!  

-love from Wendy

A Milestone

Sam's trach was removed today and everyone said that she was doing just fine. When I arrived this evening, the nurses and respiration technician all couldn't wait to talk with me and to ask if I had seen her yet. It was truly great to see Sam without the trach after 4 months of first being on a respirator, and then trach collar with oxygen. Apparently she too was very happy and pleased to have it removed. Sam was sleeping this evening, so I decided not to try to wake her up (not that she would have woken up if I had tried), but it seems like she might actually be getting back onto a more regular sleep schedule. I must say all the nurses, etc. are extremely positive and they really seem to get to know the patients and family members. It was nice that they all were so excited for Sam and for me. It's one more step forward for now.

Yes You Can

The most amazing thing happened today, Sam began to read again. Her first words that she read were "Yes you can", which happened to be on the cover of an old Vogue magazine about Barack Obama. I was so taken aback that I asked her to try and read some other words on the cover, which she was able to do. I then took out the news section of the Sunday paper and she was able to slowly read some of the headlines as well. She could not make out all of the words, but she did pretty well, and I know she was understanding what she was reading. We also had some comic relief today. Sam sometimes says nonsensical words when she is trying to communicate. Today that happened a bit, and all of us, including Sam started laughing. I think Sam recogonized that the words were not what she meant to say, but they were funny nontheless and so, throughout the afternoon, we would sometimes just start laughing and couldn't stop, including Sam. With Donna Summers playing in the background, and Sam's beach volley ball being batted around between the four of us (Wendy, Aileen, Sam and I), Disco Sunday turned out to be a great all around day.

Time Marker

It has been exactly 4 months (16 weeks) since this tragic occurrence took place. The doctors at that time did not think Sam would survive. She has certainly made great progress since that day, but has a long, tough and uncertain road ahead of her.

Today when I arrived I found that Sam had been placed in the Dining Room, next to the window which looks out onto the 495 expressway. She along with 16 other patients were lined up in the room all facing the large screen T.V., but many, like Sam were fast asleep. I decided to take her into her room where we had a peacefull afternoon. She (and I), both dozed on and off while the nice spring breeze was coming through the window. Sam seemed quite content and acknowledged my presence numerous times throughout the day. She did ask me at one point, why this had happened, and I was at a loss for an explanation. I told Sam she needed to rest-up so that she could get ready for Disco Sunday tomorrow with her friends Wendy and Aileen. She laughed, seemed quite pleased and I left it at that.

The Little Houdini

Although Sam was fast asleep for most of the day and evening yesterday, apparently at 3:30 am this morning, she was wide awake and pulled out her trach. Yes, she pulled her whole trach out. It was a couple of hours before the nurses noticed and fortunately Sam was fine and they were able to reinsert the trach without difficulty. The good news is that when they tested her oxygen levels she was still at 100% and they now think that they will be able to actually remove the trach entirely on Monday, if all goes well. The bad news is that they now do not trust that Sam won't pull anything out again, so they had to put mesh mitts on her hands this morning. Sam studied how the mitts were placed on her hands, and by the afternoon had untied them and taken them off, much to the nurses horror, and i.e. they dubbed her the little Houdini. After Sam figured out how to take the mesh mitts off, the nurses felt the need to up the ante, and so Sam now has on what looks like oven mitts. She was already studying them this evening when I visited her and am sure it won't be long until she figures those out as well. Sam was actually not doing well this evening, as her speech was mostly unrecognizable and she was totally fixated on her mitts. Hopefully tomorrow will be a better day.

Shh......Sam is Sleeping

Sam was sleeping all day yesterday afternoon. Se slept through a visit by Wendy and some of her therapy and then later in the evening, when I went out to visit, she was still sleeping soundly. The Nurses checked on all of her vital signs just to make sure she was okay. All of her signs were just fine, so then we all decided to stop trying to wake her up and just to let her sleep and to keep on healing.

Looking at photos this past Sunday

Trach Capped

This evening Sam she was doing really well. They had capped her trach which meant that she was able to better express herself with her voice and that most likely, over a short period of time, they will be able to take the trach out completely. This is really great news. Sam looked good and was asking many questions, mainly about what happened to her, where was she, what day was it and what was going to happen to her and to us. She also asked if there was a cafeteria. She was tired as she had a full day of rehabilitation and she promised me she would get some rest. When I left, she blew me a kiss.

Snowstorm

This is the eigth or ninth snowstorm of the season, and it will likely prevent my visiting Sam today as Yonkers has so far recieved about 6 inches of snow and more is on the way. It is hard not to feel badly about my missing a day since it always comforts me to see Sam, but I did speak with the nurse this morning who said that Sam had finally slept better last night and thinks she is adjusting to her surroundings. I actually think it has something to do with the sedative they gave her yesterday afternoon! In any case, today is a very big day for Sam, as she will be evaluated by all of the therapists and then they will start working with her immediately. I'm looking forward to seeing/hearing all about her progress as the week unfolds.

THUMBS' UP

Sam's second day at Park Terrace. She is still getting adjusted to her new surroundings, other patients and staff, not to mention the three other people in her room. She was having a good day despite the fact that she did not feel well, and told me so. After I moved her back into her room from the hallway (where the aids had put her in the morning...with some of the other residents), the aids then put her back into bed via the airlift device (which Sam hates) and then she eventually relaxed and regained her normal temperature.  She then told me "I'm feeling better now"  which meant a lot.  Wendy and I talked a bit with her, she recognized Blondie on the radio and made fun of some really bad music on the radio as well.  The nurse came in following up from earlier and gave her a mild sedative and shortly thereafter, Sam went to sleep.