Forrest in the tilt table
Friday, April 29, 2011
Monday, April 25, 2011
So he is trying so hard to communicate with us and he is doing his best to survive the storming/tremors and come back to us. It is obviously hard for him and he has lost a lot of weight over the last several weeks. But for him to rally so quickly after his few days at Shepherd is impressive. He is trying so hard and Shepherd is obviously a great place for him to be.
Austin is a superstar as Brian Selfe so aptly pointed out yesterday. Mrs. Sharples pointed out that Forrest is indeed a Jedi and I can tell you he is the toughest guy I have ever met struggling thru this pain and issues. I can tell you further that Forrest is made out of Awesome! He is making progress every day.
The other star in this whole situation is Mom. She hasn’t been home since this started. She steadfastly has stayed by her boys and is there every day making sure everything that can be done for him is being done. She is there with him night and day representing his situation to the Doctors, nurses and therapists. She runs her business from wherever he is and she is his Florence Nightingale. She is amazing and will never give up on her boys, the most amazing Mom I have ever met (excluding mine) and is also made out of Awesome.
So that is our update as of Monday night, like I say it is a mixed bag but much better that we were a week ago. Team 44 is going strong and Forrest is doing his best to come back.
Dad and team 44
Saturday, April 23, 2011
In spite of his weakness and storming, he began his therapy sessions yesterday. The exciting news today was his first communication in weeks. He was able to respond briefly to his speech therapist's questions by blinking once for yes and twice for no. The effort was so great that he could only maintain this tenuous link for a few moments before a storm overtook him and his racing heart and tremors swept him away. I ache to hear his voice. The last time I did was March 27th when with great effort he whispered "thank you" to a nurse who changed his intravenous catheter. The tremors are heartbreaking. Sometimes moving his arms or legs helps, sometimes a wet cloth on his head, sometimes repositioning him breaks the cycle, sometimes extra medications grant him a reprieve. And sometimes nothing seems to bring relief and we just have to ride them out.
Our day was brightened by a visit from Brian Selfe, one of our incredibly poetic blogsters, and his son Tyler stopped by to deliver Andy's Devine homemade cookies and his mother's amazing chocolate Easter eggs. They arrived just in time to help us move Forrest and his belongings to his new room (his18th room since the accident).
Tomorrow is Easter, Forrest. Rebirth, new beginnings, faith, daffodils & "peeps"... I will give thanks for my many blessings; your spirit is alive & you are fighting your way back to us, your brother's strength of character and uncompromising commitment, your Father's patience with me and devotion to his family, my brother's & sister's love & support (Granma Boo would be so proud of her 5 "Pebbles"), the amazing generosity of your extended family, our friends & colleagues, the talent & compassion of your many doctors, nurses, & therapists, my growing faith that you are meant to lead your own life, that you will reach out in your own time to your family, friends, and community.
Tomorrow, I will celebrate the joy & love in our lives and I will pray for patience (not my strength) and the courage to embrace whatever the future brings.
With love to all of Team Forrest,
Thursday, April 21, 2011
Today has been filled with hope as well as tears. Forrest made the move by ambulance to the Shepherd Center and received an uplifting warm welcome. As news of his return spread, many of his previous nurses and therapists stopped by to see him. There were a few tearful moments as they expressed how sad they were to see the extent of his setback. But it was also inspiring to see how committed his team is to getting him back on his feet and talking again. His medications and nutrition are being adjusted and if he’s strong enough, he will participate in physical therapy, occupational therapy, and speech therapy tomorrow.
I’ve been watching an HBO mini-series called “The Pacific,” which follows several groups of WWII marines around the Pacific theater. One of the mortar-men, Eugene, goes from being a fresh recruit to being a seasoned veteran, showing new recruits the ropes during the intense island battles. Being back at Shepherd, watching other patients and their families, and reflecting on how far we’ve come, we have begun to feel like battle-hardened veterans. We now know how to dig our foxholes, but it hasn’t gotten any easier. All we can do is focus on gaining small amounts of land, day-by-day. Forrest made so much progress at Shepherd the first time, we know he can do it again. They have reassembled his original team and they are ready to fight for him. As one of them so poignantly stated, “This is where miracles happen, it’s what we do.” We’ve seen it before, we’ll keep working around the clock until Forrest makes it back again.
Austin and Team Forrest
Wednesday, April 20, 2011
The place where Forrest made the most progress after his UVA experience was Shepherd Center. Hopefully we will move him there tomorrow and we all hope he will make the same sort of progress that he made before and we can get the storming under control. Dr. Kaelin and his team of doctors, nurses and therapists were magic for Forrest before and we are all hoping a repeat engagement that is even better.
So the plan changes and it remains the same. Get Forrest better, we go forward one day at a time. He is trying so hard and he tells it to in very small ways, which is the only way he can right now. But he is in there and he is giving it everything he can to get back to us.
So Hopkins or wherever he goes after he gets thru the storms and progresses will have to wait to for another day. First to Shepherd , then on to the rest.
Thanks for everyone’s support.
Dad and Team Forrest
Tuesday, April 19, 2011
Mom, Dad, and I put together a case presentation of MRI & CT scan clips, diagnostic reports, and other information on Forrest's case. Dad went up to Johns Hopkins and presented it to Neurology docs there. They've accepted him and we may be moving him by air transport (medical jet) as early as this Thursday, depending on bed availability. We are looking forward to being closer to Home and our VA friends, but we will also miss the great and generous friends (as well as wonderful doctors nurses & therapists) in Atlanta. Hopefully he will be strong enough to someday make it back to rehab at Shepherd Center, where he made such great progress before. We will let you know when he's ready for brief visits from friends.
Austin and Team Forrest
Saturday, April 16, 2011
Let me tell you what your days have been like lately. Your Mom, and Austin and I rotate shifts with you so you are never alone. Your Mom is with you most of the day, then Austin comes in the afternoon and then I come in around 11pm and stay until morning when your mom comes in and the whole thing starts over again.
Your Mom stays with you most of the day. She relieves me about 8am. She talks to doctors, chases down medical records, looks at other TBI research on the internet and is constantly in touch with your Dad. She also does PT three times a day, even if PT comes to work with you and if they missed your appointment because you were having an MRI or other procedure. This is how your Mom does your PT with you. First, she takes off your fancy sheep lined boots you wear during the day. These boots keep your feet at right angles so your tendons and ligaments don't get too tight. So she takes off her shoes and climbs onto the foot of the bed with you. Then she gently rubs your feet and calves and starts to slowly stretch your long, sinewy legs. She holds your legs and maneuvers them into the range of motion so your leg muscles remember how to move and it stretches you out from lying in bed all day. She works on one leg at a time, and then she gets out of your bed. She goes to the side of your bed and leans over to stretch your arms, starting with the hands and fingers and wrists. Then she gently lifts your forearm up and rotates a little at elbow and all the time she is talking to; you come on Forrest, relax, lean your arm out, ok back in, that's good. It is important for you to keep your range of motion in your arms, shoulders, and legs. Then she talks about the stories behind all the photos on the wall. She reads you the comments entries from your blog. She also reads books to you. Currently, she is reading you "To Kill a Mockingbird".
In the afternoon, Austin comes in so your Mom can run a few errands and get home to meet me for dinner. That is in an ideal world when there haven’t been any complications during the day. Last night, she did not leave until almost midnight, which is a 16 hour day. I try to get her home for dinner so I know she will eat something. Sometimes she gets to bed around 10pm, but usually it is later than that, then I head into relieve Austin.
Austin stays with you in late afternoon until about 11pm. He keeps up on nurses and technicians and makes sure you get the right meds at the right time, he makes posters of photos for you to look at, updates the blog, shows you videos that friends have sent you, tells you stories of your adventures together, and helps turn you in bed if the nurses are short staffed. He speaks for you. When doctors show up, he knows your case as it evolves every day, so well, that he can convey concerns and ask questions. I am so proud of your brother for being so rock steady for you. He is an amazing big brother.
I come in and watch over you at night. I make sure nurses are on schedule and that you are getting your meds. There is wireless in the hospital so I can check emails and look up stuff on the internet, sometimes if you are really quiet and all is well, I will watch a movie on Netflix while you sleep. As I watch the movie, I see your head over the top of my screen, the lights from your monitors blink and all is quiet. You are peaceful and sleeping well and I am awake, ready to intervene if necessary. We all constantly watch over you and document everything that you do, everything the nurses do, all the meds, all of your signs and symptoms, what you like and what you don’t, your reactions to procedures, lights, sounds, what the docs say when they come in and any other issues that come up. Let’s just say, there are a lot of notebooks we have filled up in an effort to track your progress and your declines. Your mom writes letters to you and when you are ready, you can read them yourself.
During all this, nurses and technicians come and go, day and night. Every two hours your get turned in bed so you don't get bed sores and it also helps you avoid pneumonia. If the nurses are running behind schedule and there are two of us, we will do it ourselves. Then every 4 hours they take your temperature and every 6 hours they stick your finger to check your blood sugar. Almost every four hours you get some medicine or just water that goes into your feeding tube. This is called a NG tube (Nasogastric) and goes in your nose, down your esophagus, into your stomach and ends just inside your small intestine. This is how you get your nourishment for now and some of your medicines. Soon when your fungus clears up, the surgeons will insert a PEG (Percutaneous endoscopic gastrostomy) into your stomach and that is how you will continue your nourishment. This will allow them to pull the NG tube so the Speech Therapist can start working with you on how to swallow. Then you can learn how to eat and drink again and of course talk. We can’t wait to hear your voice and your laugh again. So you can see that to get that to that point a lot of other things need to happen first and each one of those takes time. You have been through this all before and so have we. Now we just keep looking down the field for more hurdles and jump those, sometimes daily, sometimes every hour.
But we keep going. We see you at the end of all this craziness. We see you at the farm, with your friends and family, I see you on a horse, galloping up a hill with Rae and Kent and Austin, laughing all the way. I see you shoveling snow with Sundance. I see you watching an old movie in your man cave (basement). I see you sitting around the dinner table laughing at something Austin said. I see you playing Lacrosse, running down the long grassy field. So we keep seeing you Forrest and we keep telling you that we see you. And soon it will not be a dream, but a reality.
Last night a night nurse told me about the amazing recovery of young women that had an aneurysm rupture and right sided massive cerebral bleed. She spoke at a conference the nurse attended. She speaks of hope and what she overcame. She is now at college earning a Master’s Degree in Vocational Rehabilitation. So we pasted her link below for others that follow your blog to see another success story. She got over the hurdles Forrest and you will too.
Aunt Tricia and Team Forrest
|Aunt Tricia reassures Forrest during on of his "storms." "Sometimes a tender, reassuring touch is the most powerful medicine." - Forrest's Mum|
Wednesday, April 13, 2011
Monday, April 11, 2011
It's been a long 11 weeks since I last got to see you at UVA. And I know if the time has felt long to me, it must feel much longer to you. When I saw you last, you were still in the process of waking up so it was amazing to walk into your room and be greeted by your open eyes focused in my direction. So good to see you, cousin.
I got to be part of your physical therapy session today. You did the work, I sat on the edge of the bed and served as a target for your rotating arms. Your therapist is awesome - spunky and supportive, pushing you because she knows you're ready to get moving again. We worked on head movements (not your favorite) and then spent a long time stretching, flexing, and moving your arms and shoulders. You worked hard. By the end of the session, everyone was sweating and ready for a rest (and only partially because the hot Atlanta sun was heating up the room). She gave you some homework assignments before she left and since your mom was with us at that point, I'm sure you'll be working on those tomorrow morning before your next session. :)
Our other big adventure today was your move to a room down the hall. You've graduated from ICU to the intermediate care area, which means new nurses and a new room setup. Although we setup your digital frame with pictures of friends and family, the new room could still use some decorating (I'm sure Team Forrest will help remedy that shortly - we were missing some tape this afternoon). I've got good feelings about this room, Forrest. It's bed number #15 in your journey - a number that can seem a little daunting until you remember that it will one day only be a footnote in your journey. All that matters is that each bed is bringing you closer to home.
Finally, just wanted to tell you that I'm awed by the strength that surrounds you, Forrest - I know you can feel it in the room with you. Your team this week - Mom, Austin, and Aunt Tricia (supported by lots of phone calls from Dad) - continues to serve tirelessly as your 24-hour cheerleaders, advocates, entertainers, and constant supporters. Last night I sat with Austin as he read you texts, showed you a great video put together by your friends, and told you about upcoming visitors. I passed Tricia in the driveway last night as she left to sit with you during the late shift and heard her call your mom to check-in right when she woke up this afternoon. And today I watched as your sweet Mum talked with doctors and nurses to make sure you are getting the best care possible, gently stretched out your tight leg muscles, and rubbed your feet so you could comfortably drift off to sleep as you pushed through a storm. Beyond the fans that cheer for you in the room every day, you have daily comments, emails, calls, prayers, and well wishes from people all over the country who are cheering for you just as boldly. You are certainly loved a lot.
Back to cheering with the rest of your fans in VA...
|Watching the new video your friends sent|
|Working hard during physical therapy|
Saturday, April 9, 2011
Thursday, April 7, 2011
Hey Forrest it's your Mum. Just want to tell you how proud I am of all your work today. It has been a long hard day for you and since you probably won’t be able to remember most of this time, I want to tell you about your day. The morning was consumed with more tests, doctors and new medications. About 2pm you received another dose of Morphine for the pain and brief tremors that over take you every few hours. The doctors believe this might be similar to the "storms" that you had back when were at UVa and have to do with your brain trying to find its new equilibrium, after the trauma of the brain surgery on Monday. Right after the Morphine, one of your Physical Therapists came in to work with you. She came to the ICU to work with you for the first time yesterday.
She has this great upbeat energy and a twinkle in her eyes. She first had you work at slowly tracking her with your eyes as she moved around your bed. She kept moving around the room and you tried so hard to follow her with your eyes. Then she got your arms moving, flexing and extending your wrists, elbows and shoulders. I watched as she gently held your arm in her hands and urged you to make some of the movements as you struggled against the weakness and medication induced fog, "Swing out, push hard, you can do it, beautiful job Forrest, that 's all you !" You tried so hard. I am in awe of your quiet courage and perseverance. She promised you a Salsa dance when you’re up for it, but we all know that you are the dancer in the family, maybe she could help Kent with some Salsa moves.
At 6pm I got some time alone with you. Without the doctors, nurses and technicians that come and go day and night through your room, I was able to reconnect with you again. I pulled up a chair next to your bed & read “To Kill a Mockingbird” to you. Do you remember when you portrayed the character Jem in the play? You have always pulled through the tough scenes and I know you will again. You started to have another small tremor and I was able to move your arms and just kept reading. The tremor passed quickly. I loved this time together, just quietly sitting there, reading to you. It was relaxing to me and you seemed to enjoy it . Perhaps we both needed to relive the simple bed time moments of earlier, simpler years.
You are my sunshine-your light is burning still, just more quietly right now. The storm clouds will pass and your inner light will come shining through to all of us waiting, holding our breaths, willing you to heal and shine again. Goodnight my sunbeam. Rest quietly tonight, you’ve worked hard and had a good day. Tomorrow will be better still. One day at a time, slow and steady. We can do this.
In addition to all the messages, prayers and special visits from “old” friends, we are grateful for our new friends in Atlanta who have opened their hearts and homes to give us safe haven while we regroup our forces every day so we can bring Forrest home.
Mum and Team 44
Wednesday, April 6, 2011
Tuesday, April 5, 2011
He is still in the recovery room and will be back in his room soon. We will be taking turns to stay by his side around the clock so when he wakes up he will have someone he knows with him.
We are again grateful for all the support, blog posts, emails, and thoughts and prayers that surround us every day. Thanks so much and we will update tomorrow.
We have been here before and know the way out. Arm and arm, here we go.
Aunt Tricia, and Team 44
There are times in our lives when events out of our control define us in the most intense circumstances. This family has a determination of moving forward, the courage to stand strong in the middle of the swirling unknown, amazing connections to family, friends, and friends we have yet to meet. My sister and I were walking across a busy street here in Atlanta and she reached out and hooked her arm around mine. As we looked both ways and crossed, I realized how important it is to hook arms and watch out for each other. Our family has been fortunate that we were instilled with that mantra to look out for each other. And as we have moved through our lives we have held fast to that belief. Now we look around and open our vision to those who surround us now in some dark times. I am but a part time visitor to this present circumstance and I amazed at the wonderful support that has come our way. So as you continue to heal and find the path that will lead you back to us, just remember there are a lot of people hooked arm and arm and looking both ways.
Yesterday afternoon you had an MRI scan to compare your last images. There was an area in the frontal part of your brain that need more detail. Last night they did a Contrast MRI that showed a possible abscess in the frontal area of your brain. This is a small pocket of infection that needs to be cleaned out immediately. The surgeon left about an hour ago and discussed the plan with Rae and Kent (via conference call). So they will take the flap off, remove the abscess and clean the area out. They will leave the flap off for now. The surgery will happen today, they are just waiting for a time slot to open. While we wait, I watch your mom hold your hand and talk to you about coming home to the farm, having a big party and inviting all your friends and wonderful nurses and doctors to come celebrate your recovery.
You are young and strong and courageous. So we will do this and move on. As my brother John says, “work the problem”. We will focus one day at a time and get through this moment and onto the next until we get you home at the farm.
Love Aunt Tricia, Mom, Austin, Kent and all Team 44 members far and wide
“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.”
- Harriet Beecher Stowe
Sunday, April 3, 2011
Saturday, April 2, 2011
We are sustained, in Forrest's seemingly unending battle, by your love, prayers, and encouragement. He is valiantly holding his own tonight. He is being kept under deep sedation and is still on the ventilator. Serial CAT scans of his brain show little change. Every 12 hours, they lighten the sedation in order to assess his neurological status. It is a very brief window because he begins to fight the ventilator but is not strong enough yet to safely breathe on his own. Tonight, during this fleeting moment he lifted himself out of the twilight just far enough to respond to our urging and wiggled his right toes again. Then he began to cough and gag, so the IV sedation was cranked back up and he slipped away. The nurses here are working around the clock to maintain his vital signs and try to prevent pneumonia, while we work with the doctors to understand the reason for his rapid decline. It's so gut wrenching not knowing why this happened or how to turn him around. Surgical removal of his skull flap is still an option if he fails to make more progress in the coming days.
One of Forrest's other mothers, Valerie Lee, drove down from Virginia for the week-end to fill the void that my sister, Lobie, left when she flew out Thursday. Valerie insisted in relieving us of a few night shifts and has spent the last two nights keeping vigil and sharing the news from home with Forrest. Her love and optimism have provided us with a vital life line to our community, just when we needed it most. Austin, our first born and Forrest's champion, continues to amaze and inspire me with his gentle reassurance and steady strength. If I stumble and look down, he is always there to catch me. Kent leads the medical charge and is relentless in his pursuit of the answer that will knock down this wall between Forrest and his future. I am certain that together, we will claw our way out of this dark hole again and will be posting pictures of Forrest's winning smile soon.
With love to all,
Mum & Team Forrest