September 4, 2014
From August 28th:
Oh, it’s so hard when so much time goes between updates and I apologize for that. I’ll chalk it up to a leveling off in mom’s therapy and my return to my internship/school and my own healing process. However, the last week has seen a lot of activity and I am here in Atlanta participating in the rehab process, and Oh, am I excited to share! I’ll try to not bore you with the redundancy of my excitement and over use of exclamation points with which I am so prone. But the reality is that things are pretty phenomenal here.
It may have been a while since I have mentioned this in an update, but Traumatic Brain Injuries take time. We heard “it’s a marathon” so many times, and oh, it’s so true. The brain is able to relearn so much, but it takes time. It takes work. It takes repetition. And does it ever take patience. Mom is the perfect expression of the joy in the simple things and each moment I am with her I am so deeply thankful for the patience I learned from her. She is relearning daily activities that come so natural to you and I, and instead of expressing her frustration, she is so thankful to be able to do it at all. Yes, she knows it takes her a long time to put on her shoes, but by golly, she can put on those shoes. (Sort of—depends on the shoe, just to be clear.) She watches non TBI people walk and can express how challenging it is to walk, but in the same breath expresses how inspiring it is to watch other patients she has been in rehab with walking and how thankful she is to be able to take the steps she is able to take. There are so many levels to what she is doing daily, but I tend to focus on walking. I believe my mother will be able to do these updates herself soon, and out of respect for her privacy, I choose to focus on walking as an example of her progress until then. It is a fine line of what to share and what to keep private. Walking is also such an integrated part of our lives that we do not often think of what this ability creates for us until it is taken away. So if you are trying to picture what this looks like for Lori, just imagine learning how to do absolutely everything you do on a momentary basis. Her heart has always been beating and her lungs have always been breathing (mostly) but even breathing takes coordination with the brain for much more than you would imagine. But enough about TBIs for now—let’s get to the good stuff!
I have been in Atlanta for the last couple of days for “Family Training.” Shepherd Center is an amazing rehabilitation facility and I will sing their praise for a very long time. They strongly believe in the role of the family in the patient’s rehab and do so very much to facilitate the process. They actually provided me with a flight to and from Atlanta to assure I was able to best be prepared to support my mother in her future care. I could go on and on about the level of care that my mother is receiving. I’ll use some of the examples of my training, though, to update where mom is at in her recovery.
I have been signed off by Nursing, Occupational Therapy, Physical Therapy and Recreational Therapy. This means that they have trained me in what they feel is essential to know for her care and safety. Safety is the key word here, because while she is exceeding everyone’s expectations, safety is still a very primary concern. Mom still needs assistance and supervision with pretty much everything. They do a score to measure her functioning level and, while she has already met the goal originally set for her discharge, this still is pretty much everything requiring supervision. I will tell you though, she is at full functioning at “social cognition” and almost there for “memory.” Evidently this doesn’t happen, pretty much ever, so rest assured, she is still the Loving Lori you know and love. And she’s still sharp—she keeps everyone in line with how much she remembers things. Oh, and she almost beat me in Scrabble today. Granted, I am embarrassingly Horrible at Scrabble, but I’m pretty sure the Speech therapist and I barely edged her out. It was awesome.
We did a flight of stairs together today. She is rebuilding strength and coordination and teaching her brain how to do these everyday movements. Practice makes perfect, right?
Part of mom’s discharge plan was a 3 hour long neuropsychology evaluation. Direct quote as she exited, “man, I am wasted.” Man, did she work hard, though. The goal was to evaluate her strengths and weaknesses to best direct her last week here and guide the goal setting process for her outpatient rehab which should begin shortly. She plans to remain in Atlanta in the Shepherd Center outpatient program and we are quite excited. This is a good thing on so many levels, but one of the unforeseen perks is that her case manager and one of her neuropsychologists will be transitioning with her. To get into the details of her evaluation here is crazy and inappropriate in this setting, but I will say that she totally rocked it out in memory and most cognitive tasks. She struggles primarily with motor skills and visuospatial elements. It is still waaaaaay too early to know what this will look like long term, but we, and her team of therapists, are very optimistic. The brain is a mysterious entity and her type of injury manifests in many ways because not only did she have specific area injuries, her injury has a diffuse quality, one that occurs on neuronal level undetectable to many imaging machines. Ai.
We have officially left the building. Temporarily, albeit, but still… the feeling tonight of pushing mom down the sidewalk of a busy Atlanta street on our way to a yummy vegetarian meal probably shouldn’t have felt as good as it did. But, wow. Who knew watching your mother maneuver her wheelchair through a dining room could bring you go tears?? Wow.
August 2, 2014
Today was huge. Many days seem that way, but today really was. Huge. To cut to the chase, mom took her first steps today! To really help you understand what a huge day here looks like, I’m just going to run you through today. That’s the only way I can really begin to express what it looks like when I say “huge.”
6:45—dad (who is sleeping in her room as she deals with this infection) wakes up (very much sleeping in for him, a sign of sheer exhaustion) to look over at mom who is bright eyed and asks him, “where’s Jenny? Is Jenny okay?” (Love that lady.) 7:00, I text my father, who usually shows up at around 6 am to make coffee, because I am concerned because he usually only is not in the apartment by then if mom is having issues. He assures me she is fine and shows up a few minutes later because mom is about to get a bath and the room, while private, is pretty small. I am in her room around 8 as they are finishing up her bath and we get to put on her new pants I got her. The top waits, because she has some procedures on the horizon for the morning. Breakfast trays come around 9 and we begin eating her food. (I’m missing something. Her doctor did rounds before 930, but other than a few minutes of telling her good morning and I love you, it was quite busy.) Around 930 her speech therapist Diana came. Not quite sure what the plan was, but she ended up feeding her. I left the room because eating is still pretty challenging and she needs her focus. Another nurse was in there trying to start a new IV for her and then the phlebotomist was in there for a blood draw and then they had to start her medicine through the IV. Oh, and the skin team nurse was waiting for the speech therapies to finish so she could start the wound VAC. They put a vacuum on her incisions to help draw out any fluids lingering in her abscess and to also help motivate the blood vessels to heal. They were trying to get this done before the next nurse showed up at 1030 to insert a PICC line, which is a catheter inside her arm, because her veins are overworked from almost two months of IVs and she is looking at antibiotics for a while still potentially. Poor thing had ‘em lined up waiting to do something else on her. Then the nurse arrived to do the PICC line. I actually got to watch the ultrasound of her veins as she looked for the proper one. Pretty cool. I have now seen mom’s veins and vocal cords.
The PICC insertion was successful, just in time for lunch, which Diana brought for her to give her the food test to see if she is able to handle the next level of food. My poor mama looked at me and said she didn’t think it was a good idea to have to have a test now, but we chatted about how today is Friday and if she wants to potentially have grilled cheese with her tomato soup this weekend she had to do it today and not wait until Monday. Food is a great motivator and she went for it. It took some negotiating, but she is a trooper. Next PT showed up. They got her out of bed for the first time of the day. By the time I came back in, she had her shoes on but was understandably apprehensive about doing anything else. She said, “too much.” So, we took a few moments to breathe together and have a little chat. I told her I completely agreed, that it was too much for me too, and my brain was no where near as beat up as hers. But—she had been given the fly card by her orthopedic doctor to put weight on her right leg today and had been looking forward to standing up on both feet and maybe even taking a few steps. We discussed how this whole process is little steps forward and sometimes it’s a little tougher than others. There was a lot more, but she was ready to go for it when it was over. So we headed off to the gym with her substitute PT, Christie. Christie is very experienced and knew to take mom to the quiet corner. We had her Tech (?) Fred, who had plenty of muscles, which I found reassuring, whether or not mom did. (Not that you need muscles like his to do the job, but let me tell ya, he could catch her if she started to fall!) If nothing else, we could joke about that and the wings on his shoes to lighten the mood. After doing some standing exercises, mom was doing so well, Christie decided to push her. And she kept rocking it! She had her take a couple of steps, and she did it! After a couple of different exercises, for the last push, she had her walk a good solid ten feet! And mom even moved her right leg without assist at least once. It was amazing! I think Christie was even pretty excited. I could sense emotion, at least. I know I could barely contain myself. To see those first steps was beyond incredible!!
She was really tired after this, but very proud of herself. Her Occupational Therapist substitute, Kim, came to meet us in the gym. Luckily mom had a pretty mellow OT session. Her left shoulder is kind of angry so for about a half an hour, mom got to relax with a heating pad on her shoulder followed by a bit of a massage. It was a nice end for her therapy of the day.
Then back to her room around 230, where she got to rest for a bit. Her infectious disease doctor came by and a few other people, plus she had to catch up on her medicines. After a brief nap, it was dinner time. How did it get to be 5pm?? Dinner then shift change, plus vitals in between. The highlight of dinner, however, was she was able to feed herself a little! We, of course, had to show anyone who came in. I love showing off her new skills. She was pretty tickled, because she has moments where she worries she won’t be able to do things again. To be able to use her utensils was almost as exciting as walking, I think. She has been able to move her left arm for a while, but is just now beginning to develop the motor skills and strength. It’s all so incredible.
Oh! This afternoon we reread about half of her cards. She didn’t remember all of them, but wanted to go through each one, slowly, so she could take a moment to think about each person. Yes. That’s my mother. She is excited to read the rest of them. She is so touched by everyone’s love and thoughtfulness. Hopefully she will remember it all, but if not, there is such pleasure in each time we read it. She loves each and every one of you so much.
August 1, 2014
Reality is very different here in Atlanta. In Norfolk, mom spent the majority of her time in bed and when her therapists came to work with her, they often kicked us out. Here, the goal is to get her out of bed and keep her out, as much as possible. I have been able to join her for all of her therapies so far other than her neuropsych group. Dad usually sits out the therapies because mom is often distracted if he is around. I seem to help her push harder. She told dad this afternoon that I help her eat more. Makes me smile. I, of course, am thrilled to be able to observe her therapies and am soaking it all in, not just for mom’s sake, but for my future clients. But enough about me. :)
This update is long overdue. I apologize. I last updated Friday night, I believe, (maybe Sunday?) but Saturday morning we awoke to discover that she had developed a very angry abdomen. A lot of question marks followed and I have an aversion to posting questionable things, especially any that may cause undue concern. I am a firm believer in the power of manifestation and did not want to manifest concern. But long story short, mom developed what is called Buried Bumper Syndrome. It happens in .5-2% of PEG tube cases and usually in 6-9 months after placement. Basically her feeding tube had migrated to just below her skin on her abdomen and an infectious abscess formed. They pulled the PEG out on Monday and hoped that the antibiotics would take care of it, but did not, so today she went in for surgery to irrigate and drain the areas. Hopefully this, plus antibiotics, will take care of it. We are still learning more about the details of the situation. Many specialists are on the case, as called in by our doctor, which is actually quite nice. This is true of our experience here, as we have seen more than one specialist so far. We are very pleased with our doctor. He even takes the time to draw us pictures to help explain things!
Although some medical issues have risen in the last week, there has been quite a bit of progress, too. Lori is practicing using her “big voice.” She is learning to speak on exhales instead of while she is inhaling. They were about to test her to move her up a level on food until she had to have some medical tests run, delaying that testing. Hopefully she will get to add grains soon. We chatted today about how nice it will be to be able to have grilled cheese to go with her tomato soup.
Even more exciting—the orthopedic doctor cleared her bones for Friday! This means she will be able to put weight on her right leg and regain full range of motion in her right arm. She is so excited to try and walk! We will also get to learn how to do transfers with her and move her around. Freedom!!
The days are very full. She has been having many tests run. It feels like if she is not in therapy, she is eating or doing something with a doctor, or trying to rest. We try to get out to the garden with her everyday, but the last couple of days she has been pretty spent. I hate doing much of anything when I am sick and she has been doing at least three hours of therapy. Anyone on staff who has worked with her is amazed by her. She is one tough cookie!
I asked her this afternoon if she wanted me to tell you all anything. Her response, “I am strong, I am working hard, and I want to get better.” So very evident in every moment she is awake. Her humor is drier than I ever remember it being, and I love it. She cracks us up all the time. Her kindness is never ending.
Thank you all for your kindness, prayers and positive energy. We feel it!
July 28, 2014
Well, one thing I can tell you that has not changed about my mother is her amazing kindness and consideration. One of the joys of my day today was more than one conversation with her that amazed me. Tonight, as her night shift nurse tech (aide, partner, assistant—they are techs here) was leaving after checking her vitals for the first time of the evening, mom thanked her more than once and told her she was lovely in multiple ways. She also profusely thanked her daytime nurse from the weekend and the extern who worked with her. She wanted to be sure they knew how thankful she was for their excellent care of her. Mom also wants to be sure that dad and I are taking care of ourselves. I assured her we were. As she was falling asleep this afternoon, I told her that we were heading to our room for lunch and then to a meeting, she wanted to be sure I had “fun at my party.” I laughed and told her I wasn’t sure how much of a party a family support group for brain injury is, but that I would do my best to have fun. Always thinking of everyone else…
As you may be able to infer from this tale, her communication has dramatically improved. It’s possible my ear has gotten a bit more sensitive as well, but even my dad has been able to hear things across the room and he likes to joke he is hard of hearing (which he is.) She very distinctly asked me this afternoon what her goals were while she is here, which tickled my soul in more ways than one. So I went and grabbed a notepad and we worked on setting some goals together. As I was writing them, I realized she was reading them, so did a quick little test. Sure enough, no problem there! Mom was able to read and comprehend what I had written. Such a joy!
This evening, she was asking about my friends and chatting with me about my brother’s farming project. She thought it was so wonderful that I was able to reconnect with an old friend from high school, Carolyn, who she remembered, and was so touched that she had come to visit.
Tomorrow her first full week of intensive therapy begins. She expressed a few nerves about it and we assured her to just do her best. We told her we are so proud of her and all the progress she has already made. She is so determined and such an overachiever! We told her to just focus on what is in front of her and to not worry so much.
Shepherd Center continues to please us. I look forward to sharing many stories of her successes and simple pleasures of life here.
Again, such deep gratitude to all for the love and prayers. It is surreal living life on the ebbs and flows of such intense emotions. The “veil” is very thin here. Life is at its fullest and scariest at the same time. Growth is immense and the preciousness of life is impossible to ignore. We are so very, very aware and thankful for the love and support of our friends and family. From all of us—thank you.
July 26, 2014
This update comes to you from the lovely city of Atlanta, Georgia! Yes, you read that correctly—we are in Atlanta! Lori and Rick flew down here Thursday afternoon and all are settling in. We are at Shepherd Center, which is one of the leading rehab hospitals for brain injury in the country. We are already very impressed with the expertise and facilities and are already seeing improvement in Lori. It is so wonderful to get at least three hours of therapy daily, especially by therapists who specialize in brain injury. Everything is a little different, so we are still adjusting a tad, but Lori is rocking! Today she killed it! With her speech therapists, she did so well with swallowing that she has moved up a level in terms of her diet—now she is able to have “ground” food, not just pureed. She is still receiving a majority of her calories and hydration through her feeding tube, but we love the progress! Not only was that amazing, but she did her teacher self proud when they came in for her cognitive evaluation. You could see the pride on her face as she answered a large majority of the questions correctly. She only got a little tripped up when they asked her to repeat a number sequence backwards and I think a 6 number sequence. I tell ya, though, her roommate had guests and even I had a hard time with those sequences. (I guess I did have a brain injury, too, but still…mom was awesome!)
Her PT and OT sessions were very good, as well. She even got a real shower!!! They said she was so happy to be in the water. I can imagine!!!
We have an apartment the facility provides free of charge for the first 30 days. It is quite lovely for what it is. There are many available food options within an easy walk and we have a kitchen. Dad and I were able to make it to the roof for the last glimpses of the sunset and I was charmed by the skyline. Oh, and there’s a garden we can take mom to! They have an amazing Therapeutic Recreation program here and we are super excited for her to start some horticultural therapy! They also have music, art, and pet therapy, which is wonderful. There is a gym and the pool here was used for the Para Olympics the summer of the Atlanta games.
I apologize for the radio silence the last few days. I was back in Oregon taking care of some things and a lot was very up in the air as we tried to get her settled in rehab. I didn’t want to jinx anything after all of the challenges we have experienced leading up to this final success. But—Lori’s last few days in Norfolk were great. One day she even got to hang out in the hallway and listen to a string quartet and was given a hat by one of the helicopter pilots!
Shepherd has a BBQ and concert this Monday. I am excited to take mom! They also offer haircuts for patients and massages for family. They are very family oriented and really focus a lot on education. They even wrote down parts of mom’s diagnosis and told us we can take it to the librarian who will pull specific research for us. That’s what I call service! I can’t wait to see what’s to come!
July 20, 2014
The morning began with a laugh and excitement today as Rick tried to have Lori smell her lavender and after pushing it away twice she vocalized, “I don’t want to smell lavender.” We chuckled with excitement, as this is an exciting step. We are slowly learning her needs, although there are definitely moments where we are heartbroken to not be able to know what she is trying to tell us. It’s harder to think of yes/no questions than you would imagine. She most clearly is able to tell us when she wants water and that she loves us. I downloaded an app called SoundingBoard on recommendation of a dear friend and can’t wait to try it out tomorrow! Until then, we joke with her when we can’t understand her and just say “You love me?” Usually she smiles. She got a real kick out of dad telling the 400th person today the story of the lavender. Goodness gracious, I’m pretty sure she rolled her eyes and I’m not sure her smile could have been much bigger.
Kelley, Myles, and Nate arrived today and as you probably know, Lori is not much happier than when she is surrounded by her children and her grandson. Her smile hardly left her face all afternoon. We have been able to roll her outside daily and you can really tell how much she enjoys the breeze on her skin. It’s one of my favorite times of day and today the whole family (minus Sara who had to stay in Roanoke) got to be outside with her. Myles and Auntie JJ got to run around as Nate and Kelley enjoyed the pleasure of fresh air with mom. (Myles had his own adventure—he got to get inside of the helicopter and sit in a chair that the nurse sits in when they are saving the lives of people like other people saved the life of his Oma. Oh, and the pilot gave him peanuts to feed the squirrels. Not sure which was more exciting, actually.)
Lori continues to show progress daily. Often a very big day is followed by one of rest, as the cognitive effort is draining in ways we can only begin to imagine. Her pain seems to be getting lighter and her throat and bones seem to be healing well. Her brain is working hard and she shows her determination to any who will watch. She loved “showing off” during her exercises this evening for her kids. I put her through her exercises with Kelley and Nate watching and boy if she didn’t do them better than I have ever seen her do them! She did everything on her right foot (a first with me) and did most of her left side. And this at the end of a looooong day! It was sheer determination and strength, I tell ya! It is moments like this when any glimpses of fear I have had vanish immediately. I have no doubt my mother will recover.
We continue to seek the appropriate next place of care for her. It is much more challenging than you would imagine. We are optimistic, though, and the hunt will begin in full again on Monday. Until then, we look forward to a wonderful weekend of love and family, two things that make the world go ‘round.
July 18, 2014
I’m finding it challenging to come up with titles for these journal updates. How many times can you say “what a great day” or “more exciting progress?” There’s so much truth in those statements, yet they almost seem trite based on how far she has come.
That said, today was another great day! Her morning session with the Speech and Language Pathologist was better than yesterday and her OT and PT went amazing. They were so excited for how well she did. In true Lori fashion, she lets them know when she is too tired and they pushed to do a little more, which she did. We love seeing these glimpses of the woman we know and love. She is determined to heal.
She is beginning to try to talk more. I was able to decipher a few of her needs this afternoon, which felt like such a win! We are going to try to get a communication board, which will hopefully help. I wish I could understand more of what she is saying. She takes deep breaths to try to talk, but my ear is not quite trained. Patience is again the name of the game.
July 17, 2014
I returned to Norfolk today from a long weekend in Portland to my mother’s lovely face. Her wounds continue to heal and she’s looking more and more like herself. I had the pleasure of wheeling her to visit the ICU where she was for a week and the staff there was pleasantly surprised to see how well she is doing. She smiled, waved and even blew them a kiss. I then got to take her outside, which was actually a lot more challenging than you would think, but well worth it. I giggled more than once as I watched her face as the elevator went up and down and as she raised her eyebrows at one of the women we passed in the hall was making a bit of a scene.
She fell asleep shortly after we got her in and we were not surprised as she had yet another big day. Her kinesiotherapy session was great—she even had a little movement in her right side, which was a first today for any of the staff, at least. Mom really likes her therapist Neil— she was excited to work with him, giving him a thumbs up that she was ready to work and then high fiving him after the session.
Her awareness is still in and out and it seems it may be related to her pain. We are working closely with the staff to try to meet her needs. It is a complex and long windy road in front of us.
July 15, 2014
Lori had a great weekend. Her tracheostomy was removed on Friday and by Monday, all supplemental oxygen had been removed because she was breathing so well on her own. She was doing so great Monday morning that the Physician’s Assistant unhooked her feeding tube and Rick was able to put on her Kubota hat and roll her outside. She was pretty tired by the time she got outdoors, but was obviously enjoying the moment.
Lori has to relearn how to do just about everything. She still has her smile, but the right side of her face is taking a little longer to catch up to the left. I think her little half smile is adorable. She is waving goodbye and hello and communicating more consistently with nods and shakes of her head. She is mouthing many words and family is beginning to interpret the sounds she is making. Again, we are reminded of patience and the importance of close observation. Her pain seems to be growing as her consciousness returns, so we must watch for signs and learn to read her body language until she is able to tell us what she is feeling.
Her rehab continues to be added to and we are hoping the Speech and Language Pathologist will see her for the first time tomorrow. This therapist will observe her swallowing and begin to help her with her speech. Next steps towards the feeding tube being removed!
Lori has begun to apply her own Chapstick and is learning to wipe her chin with a tissue. This is an exciting progression. In an earlier entry I wrote about vegetative state versus minimally conscious state. This development signals her next progression, as the ability to use objects correctly earns you the state “severely disabled.” I have not confirmed this with a doctor, as I traveled to Portland for class this weekend, but I’m going with it. I’m not sure if anyone in her care team is concerned with this title, but I know it makes me feel better to watch my mother progress in what feels like a clinical manner. It also seems to increase her chances of recovery. Again, I may be stretching science by saying that, but hey—it’s my journal entry, so I can do that, right?
Many have asked questions regarding Lori’s prognosis for recovery. It’s not a very simple answer as no brain injury is the same. If you know her, you will probably agree that if anyone can make a full recovery, it is Lori. As her daughter, I refuse to believe anything else. As a therapist in training, I see her determination and her progression as very encouraging signs. When she begins talking, we will probably have a clearer picture of many things. The neurosurgeon said her prognosis is “good.” Other than that, most of what we have heard from professionals is that this is a marathon.
We’re ready to help you run this marathon, Lori.
July 12, 2014
Mom's spirit shown bright yesterday (Friday) when she awoke once again, focused and determined. The therapy team began the day by sitting her upright on the edge of her bed. To this she remained upright, with a little assistance, and continued to strengthen her neck by holding her head proud.
After her sitting exercise on the side of the bed, and a little rest, the Occupational Therapist returned to the room to check on Mom's progress. This proved to be a victorious session. Her response to command was incredible. To name a few, she gave a big thumbs up, waved good bye, and even mouthed the word "yes!" To which the O.T. literally jumped for joy alongside of Dad. All of these responses earned Mom a solid 3 rating on the Ranchos scale, and even flirted with a rating of 4! In order to achieve a 4, she'll have to be more responsive "across the board."
If the huge response to command wasn't enough, Mom's next big move was to have her trach removed! What a huge step this was. The surgery was a smashing success, and she is now independently breathing at the appropriate oxygen levels and respiration rates. This procedure and the continued development in response, both play a significant role in determining her future move to a rehab facility.
All in all, Mom's progress continues to exemplify her incredible strength and power as the person she is. She continues to amaze all near her, even in her most difficult time. With all of this, comes the continued reality that the road to recovery still portrays itself as a journey of stamina, patience, and unconditional love for life. We must remain vigilant in our prayers, light, and love for Lori-- for she draws inspiration from all. As we know, she's an angel on Earth and is now regrowing her wings.
Rancho Coma Scale:
http://www.neuroskills.com/resources/rancho-los-amigos-revised.php
July 10, 2014
First the excitement, then the lesson! Lori was up before 9 am, bright eyed and bushy tailed this morning. She was smiling away as I walked in the door. Shortly thereafter, Stephanie, one of the Physician's Assistants on the Trauma Team, came in to check on mom. Mom followed at least three of her commands- with little delay! She gave her a thumbs up, she shook her head yes and no and she wiggled her foot. I think there was another, but I can't remember what it was. This earned mom a Passy-muir, which is a cover flap thing for her trach that helps wean her from it. (An extremely simplified explanation...) It's the first test to see if she can handle breathing and coughing on her own. It also allows her to begin to make sounds through her vocal cords. She, of course, did great, with her oxygen levels remaining high. She made a few sounds, but no words. She is, though, mouthing words a lot more. Not always, but definitely more frequently.
Then, just as she was about to take a nap, her kinesiotherapist arrived for her workout. And boy did she kick butt! She participated fully on the left side. She did the same with her legs for me tonight, working so hard I could hardly keep up with her. Amazing! She stills needs help with her right side, but this is her injured side, so I think it is to be expected.
I missed that session because I was at lunch, but she was pleased as punch with herself afterwards. I tried to encourage her to take a nap and she just smiled and turned her head away from me. She wanted no part of that idea. She was wide awake until about 5 pm when she napped until her second go at the chair for the day. By this point, she was pretty worn out, but she still worked hard, holding her head up and working hard on her legs and participating in everything else. You could completely see the determination on her face, eyes closed as she concentrated on the work. We knew she needed her Tylenol (nurse got busy) but I tried to justify my guilt by reminding myself that I know she is determined to heal and that she is super tough with pain, also- all three kids, no pain med!
Oh!!! And she gave us kisses!!! She kissed me this afternoon as I gave her a big hug, then she did it again for the nurse, then she kissed my dad, then she kissed me goodnight. Talk about amazing!!
Now for the lesson. Part of today's true excitement was that this progress marks a new stage in her diagnosis. To keep it somewhat simple in clinical terms...mom emerged from her coma when her eyes opened. Then she entered what is called a vegetative state. Now that she is visually tracking, following command, reaching for items, and other things I'm forgetting, she has, without a doubt in my mind, entered what is called the minimally conscious stage. This is a very good sign. Traumatic brain injury patients are given longer amounts of time to emerge from the vegetative state because of the nature of their injury, and mom blew right through hers! She kicked it to the curb! Such a rockstar!!
I'll save the lessons on other brain injury scales for another update. Just know that Lori was in full effect today. She was playful and sassy, loving and determined. She is coming back to us!
A link to more details:
http://www.msktc.org/tbi/factsheets/Vegetative-And-Minimally-Conscious-States-After-Severe-Brain-Injury
July 9, 2014
I feel like one of these days it won't seem like yet another big day, but at the rate mom is going, she may prove me wrong. I've always known she is the strongest woman I know, but watching her work through this injury just drives it home even deeper. Tonight, after a really long day for her, we were working on her range of motion while she was in the cardiac chair, and she followed command four different times for me! This is a huge step! She moved her left foot twice and squeezed my hand twice. Being able to follow command is essential for her to progress clinically. (I'll save the educational lesson for another night- I'm too tired tonight, but trust me- y'all have some good learning on consciousness coming up. Soon, I promise.)
Tonight, she had her eyes open as we stared lovingly at each other, me talking about all sorts of things we have done together and will do and then I started working her. She closed her eyes and went to work with me. I actually kissed her feet when she was done. I may keep doing it, because she seems to be the most aware of her left foot. I can't wait to take pictures of my dad doing bowing down and kissing her feet. I know she will get a kick out of it one day soon.
We are getting closer and closer to having a facility to move her to. I don't want to jinx it, so I'm going to keep quiet for now on the name, but we're feeling pretty good. The main obstacle seems to be getting insurance to pay for the transport, but we are optimistic. I'm hoping we will have this all figured out in the next couple of days. Fingers crossed and good thoughts, please!!
Did I mention today that my mom's my hero??
July 8, 2014
Yet another good day! Today Lori had her first kinesiotherapy session. The therapist explained that he is kind of like the personal trainer of the rehab team. Because Lori's consciousness is still pretty low and she only responds occasionally to command, his therapy for her today consisted primarily of range of motion work, which he showed the whole family how to continue for her three times minimum daily. Lori has therapy goals, which thrills the Horticultural Therapist in me. She is supposed to sit in the cardiac chair for a minimum of an hour, max two hours twice daily, have her bed at 50-60 degrees three times a day and do range of motion exercises three times daily. Being the overachievers we are, we try to do them all more, but it is actually surprisingly hard, especially because we want her to be able to rest. The cardiac chair is the hardest, because we must have the nurses put her in it, and sometimes they get very busy. But we have a plan and anticipate the schedule will be more regular as we move to the next facility, where her doctors and caregivers won't be getting called away to deal with some sort of major trauma. There were 14 gunshot wounds the night of the 4th of July! Yikes.
Her nurse tonight tried to get Lori to track her pen, as Lori's eyes were open as she was doing her medication rounds. She didn't follow the pen, partly because she moved it too fast, but I pulled up my lovely sister Kelley's photo and not only did she follow it with her eyes, she followed it with her head! Loved it!
However, I think my very favorite part of the evening was when I was singing Swing Low, Sweet Chariot to her. Sara is my witness--she mouthed a word! Amazing. What a note to go to sleep on.
July 7, 2014
This morning mom had her eyes open for over an hour while she sat in the cardiac chair. She looked back and forth from each of us and then she smiled!! It was an adorable little half smile, as her brain is still putting pieces back together on both sides of her face, but it reached her left eye! I cannot begin to tell you what that felt like. We even asked her to smile again and she did it!!! She was a bit less alert the second time she was in the chair, but just as she was about to end her time sitting up, she smiled again for us. (I think she knew we really wanted to see it.) Most of her energy went these adventures, so the evening was pretty mellow. We can't wait to see what tomorrow brings!
July 6, 2014
I walked downstairs tonight from talking about how magical my mom is to open the room to see her sitting there, blinking her eyes and looking around the room!!! Now when I've said in the past she opened her eyes, she had- but not fully. This was open! And tracking from person to person! She had had her eyes slightly open while Nate and Sara visited with her, telling her about the sunset. Then they decided to let her rest and turned on some music. A big cough led to wide open eyes! For a few minutes! Then she did it again on another cough with my dad in the room (he had just left to go get food the first time). Magical!
This was the end to another day of great progress. She sat up in her chair twice, her breathing continues to improve, and her bruises are beginning to fade. She opened her eyes more and seems to be more physically aware of her body.
We are constantly reminded that this will be a marathon. The progress is often slow and it's amazing the little things that we get excited about. But progress is progress, and we know that everyday brings us one step closer.
July 5, 2014
Today was another big day for Lori! First she had her trach tube downsized. This is good for many reasons. The goal is to get it out completely as soon as possible, but safely. We have already noticed a difference, especially in her swallowing, which seems easier.
Occupational therapy got her up in the Cardiac chair today. This chair resembles a recliner meets wheelchair. Sitting upright is very important and she now has orders to be in the chair twice a day and at a 50-60 degree angle three times a day.
My biggest excitement had to be her open eyes, though. She opened them for me briefly while she was in the chair, and then for ten minutes tonight. Her nurse tonight, Mary, is hoping to see her beautiful brown eyes tonight. I told her she and I like to call our eyes cinnamon, not just Mom smiled at that, I think.
I love watching her faces. Don't tell her, but I've been taking pictures of them to tease her with one of these days. I mean, to document the process. ;)
July 4, 2014
Yesterday was Rick and Lori's 36th wedding anniversary. It was a good day for Lori, and a bit of an emotional one for us.
Today was awesome!!! Lori had a great session with Occupational Therapy. They are teaching us a ton and we are so excited to be learning and working with them. A big trend in brain injury is to prepare the families for the family member to return to the home, which is, of course, a huge goal for us. Tomorrow they said they are going to put her in a cardiac chair, which is kind of like a recliner meets wheelchair.
Most exciting for me, though, is she held her eyes slightly open for ten minutes!!! I cannot begin to tell you how amazing it is to look into those eyes. We know she can hear us!
We have been instructed to dramatically reduce the stimuli she is receiving. We will still be using her favorite scents and music, etc, but much more selectively. Her room is now very, very quiet at all times. But we do have all the cards and art that have been sent up on her walls and she still gets her love notes before bed. :)
July 2, 2014
July 1, 2014
Today was a loved filled day for Lori. In addition to the standard rotating cast of caregivers, today was full of visits from loved ones. In addition to visits from family, cards and flowers began arriving. Lori's sister Jodi is an amazing glass artist and she brought an "Army of Angels" she cast in glass. Art appeared tucked in with cards, just waiting to be hung on the walls in her room. I could barely get through reading all of the messages, I was so overwhelmed with the outpouring of love. Thank you.
Lori worked on swallowing today. Her respiratory therapist this morning said that she is exceeding expectations. I think those of is who know her well are not surprised by this. She continues to inspire all who come in contact with her, even in her deep sleep.
July 1, 2014
Well, I think my highlight of mom's day is when she lifted her left arm up and very strategically pointed first her pointer finger and then her middle finger, leaving the middle one extended and pointed at my father. I think he had just teased her about something. Maybe not, but in my mind that's how it happened. We try to find humor wherever and whenever we are able.
Mom is all settled in in her step down room. She had her first occupational therapy today. That was great to be a part of. The therapist confirmed that what we are doing is good and gave us a few more ideas.
We have begun the process of trying to figure out where she will go next. My head hurts just thinking about it, but it's a very exciting next step.
Our sweet dreams gift from mom tonight was that after we did her mobility exercises, she kept doing them, lifting her leg up. That's sweet dreams for me.
June 30, 2014
Mom opened her eyes! We got the call as we were pulling up to the hospital. Dad was giddy! The nurses were caring for her and she opened her eyes! They ran to grab my dad and her eyes stayed open and tracked to find him! Then she opened them again for the doctors. This earned her a ticket out of icu and rehab orders. She opened her eyes ( sometimes with an assist) a few times and tracked throughout the day.
It's funny how quickly one adjusts to a hospital room. The icu room's view was incredible and we became shockingly attached to her vitals monitor. The new room still gets afternoon sun but there are many less machines beeping at her, which if you know my mom, she hates a bunch of machines sending frequencies around her. Dad has a cot to sleep on and she can have flowers.
She's healing. She feels your love, light and healing prayers and is responding. Thank you from the whole family.
June 29, 2014
The ventilator is out of the room! Lori has been breathing on her own for over 12 hours. She still needs assistance clearing her airways, but is doing great! Today during her neuro checks, when the nurse held her eyelids open, she looked from the nurse to my dad and then to me on the next check. She moved her eyes again at her third check. She is still loving music and her left foot keeps on moving to the beat. She lifted her left arm on command today, which is awesome! We have hopes that she may be out of icu by the end of the weekend.
June 28, 2014
The morning began with Lori raising her right arm with purpose. This was followed by a music session with Emilee Hodges, which had Lori tapping her toes to the music. She has consistently been very responsive to music. Around 11:30, the trauma Attending and Chief performed a tracheostomy and what they call a “peg”, which stands for something, but basically is a feeding tube in her stomach. This may sound a little scary, but is actually good in the long run as it already seems easier on her and is less likely to cause infection and long-term damage. It will also make moving her easier and facilitate her rehab. For the family, it was amazing to see her beautiful face again. It did require sedation, so she had a very mellow afternoon. There is a beautiful view of the Elizabeth (I think) River from her room where we can watch the setting sun dance off the river among the structures of the shipyard. It’s Richard Scary’s Busy Town meets Transformers. The nurses assure us she has the best view. I personally appreciate the sun on my back as I hold her hand.
When her sedation is a bit lighter, she will get a trach collar and they will try to have her breathe on her own. The respiratory therapist is optimistic because her lungs are strong and she was breathing and coughing well prior to the surgery. Their concern was that she was just not aware enough to know that she needed to cough. After she has successfully been breathing on her own for 24 hours, she will be able to leave ICU, and go to a step down unit that is still trauma focused.
We know she can hear us and feel your prayers and love. Thank you again, from the bottom of our hearts.
June 27, 2014
Lori is in the Neurosurgical Intensive Care Unit at Sentara Norfolk General Hospital. Lori is suffering from traumatic brain injury, a broken clavicle, 3 broken ribs, and 4 clean fractures in the hip area. Fortunately nothing requires surgery at the moment (and may not). She had stitches removed from a lesion on her head today that is healing well. Her breathing is supported by a ventilator but she has been doing well when spending time breathing on her own. She is coughing, which is a good sign. She is moving more on her left side than right side (the side of impact). Lori is responding well to familiar voices and tapped her toes when she was sung to today. Her prognosis is good but it will take time for her body and brain to heal. The unit she is in cannot accept flowers and only family is visiting at this time-- we will let you know when that changes. She is under the care of the Trauma team and the NeuroSurgery team consults with us every morning. We will update this journal as much as we can. We feel your prayers everyday and thank you for your thoughts.
