Update: 6:45pm on 10/31

Forrest had his sixth brain surgery today. He has done well with the procedure but continues in ICU tonight as they try to balance the flow of CSF (cerebral-spinal fluid). We are hopeful that this procedure will be his turning point on his road to recovery. This surgery is the placement of a ventriculo-peritoneal shunt. This is designed to replace the small machine previously placed under the skin that was removed when the cranial implant (the lid) became infected. This small undetectable device shunts fluid when a specified pressure is reached from his brain ventricle to his abdominal cavity (the peritoneum) to be reabsorbed. It is made of antibiotic impregnated tubing and he is still on intravenous antibiotics from the previous infection. Infection is a concern of this procedure and sterile surgical procedure is practiced. 

The pressures of CSF within his brain are of concern and the shunt operates within a range of  CSF pressures. The shunt can be adjusted up or down externally via a magnetic device depending on the pressures his brain is encountering. One of the challenges with Forrest has been adjusting the pressures just right so the ventricular fluid is not so high that it is driven into his brain and also so that it is not so low that it over drains and can injure the brain. So it is a balancing act to get it just right and then get him to adjust to it. 

The plan is to get him a CAT scan in the morning and see what size the ventricles appear and adjust accordingly. If he is doing well he will go to the intermediate care ward from ICU, which has been his home for the last two and one half weeks. Hopefully soon afterwards he will return to his National Rehab room which has been his home away from home for the last several months and return to his rehab work. The cranioplasty will not be replaced until sometime after the New Year to allow his immune system to recover from the infection as much as possible.

Mom, Austin, Maylin and Valerie Lee have been standing guard with Forrest today. Dad has gotten a cold and is temporarily on the bench for Team 44. I, like the rest of you are thinking and praying for Forrest right now as he struggles through this next hurdle. 

Dad and Team 44

Friday, 10/28/11

We apologize again for taking so long to update, we will get back in the groove but this week has been extra busy! Last weekend and the first part of this week were pretty rough. Wednesday night was especially difficult, Forrest's responsiveness had declined to the point where he wouldn't track us with his eyes and definitely wouldn't give us thumbs up or really any response at all. We met with his Attending yesterday and he helped lay out a plan. Give Team Forrest any plan and we are good to go, we will go out and tackle it. It's the stasis and waiting without a plan that we aren't good at.

We've begun to do small hourly drains of CSF, to reduce the amount of fluid in his ventricles, and that has seemed to help. He is more alert and tracking better since Thursday morning when we started. Yesterday he gave Maylin and the day nurse a thumbs up, and today he gave a brief smile while we watched the fan favorite, "Super Troopers." He's doing much better tracking and paying attention to what's going on in the room yesterday and today.

We're taking each day at a time, as always, and today was better than yesterday. Forrest received an amazing and blindingly bright gift from Karen and the rest of the Dolphin Quest Virginia office, a beautiful hand made blanket with lots of bright colors shown in the pictures below. It warms up the whole ICU room! Thank you so much!

As far as the next steps of the plan, the head Doc is looking at putting in another shunt (same model as last time) as early as this Monday. It will allow us to once again control the pressure in his head, the same role that the Extra Ventricular Drain(EVD) is playing now, but the EVD, because it is external, carries a greater risk of being a vector for infection to follow into his brain. Putting in the shunt again will allow us to remove the EVD. The plan is still evolving for when we would put the cranioplasty back on, likely several months, in order to increase the chance of avoiding yet another devastating infection. In the military, they often wait 6-12 months, but in his case, because it is such a massive craniotomy, we want to minimize the effects of atmospheric pressure pressing down on his brain that occurs when it doesn't have a skull or prosthesis to create normal pressures. But like we saw before, we can and WE WILL make progress without the prosthetic. Maybe even coming home by Thanksgiving or Christmas, but all plans are moving targets, as we well know.

Thanks for the comments, you all are amazing and cheer us up and keep us going every day! Here's a quote I came across, it's kinda whimsical. " If you aren't in over your head, how do you know how tall you are?"

Love,

Austin and Team 44

Rebekah and Forrest with hand made blanket from DQV

Forrest and I watching videos from his friends

Update: Sunday, 10/23/11

We apologize to our many wonderful followers for the lack of posts this week. It has been an incredibly difficult week and we just ran out of steam. But the truth is, we have come to depend on the blog too and your comments for our own sustenance. Your support, encouragement and prayers shared through this medium have become one of our most crucial lifelines.

Forrest had such a string of great days, milestones & celebrations the week before his latest setback, that this last infection & emergency surgery seemed unbearably cruel. Now we can see that without the benefit of that week's strong parameters, we would likely have missed the early warning signs of the brewing infection. While it has been a devastating setback, we still have much to be grateful for. To date all of the CSF samples have been sterile, suggesting that the infection was caught in time and did not reach his brain. The surgical removal of his second prosthesis and the intravenous antibiotics have been effective, his white cell count is down and he is not running a fever anymore. We have taken over responsibility for all his nutrition and he seems to be responding well to a more wholesome organic diet. We take turns making & delivering his four daily "smoothies" and the doctors & critical care nursing staff have embraced our somewhat unorthodox feeding plan. Today the neurosurgeons said our approach to his nutrition is the most important thing anyone can do right now to support his immune system & help him resist another life threatening infection. Of course the best thing we could do is get him out of the hospital and back to BrightWood. But this setback has dashed our hopes of an imminent homecoming, and we were SO excited about bringing Forrest home before Thanksgiving... I guess we'll just have to reschedule Thanksgiving this year!

Without a doubt, our greatest blessings are our devoted family and friends. Our support group is unrivaled. Austin and Maylin seem to possess a bottomless well of strength & youthful optimism. When Kent or I are overtaken by the black fog of a parent's emotional despair, the unbearable fear of not being able to protect our youngest child, Austin or Maylin step in, light a candle, and lead the way. Forrest's peers and our friends continue to bolster our spirits and our faith. The indomitable Mama Bear Task Force of Valerie, Shannon, Emily & Carina graciously & fearlessly filled my shoes this week, so that I could make a pivotal business meeting. And my dear sisters (blood & soul sisters alike) endlessly restore my faith when it falters and add clarity & conviction to a healthy whole and joyous vision of the future.

Last night Forrest was able to smile at my bedside antics attempting to dance with him and, ever the gentleman, did his best to offer his hand for another round. While his smile lit up my world, his most classic "Forrest" grins are reserved now for his friends' video messages. We play them again & again. Please keep them coming!

We don't know the new plan yet or even how long he will remain in ICU, but it will likely be several weeks. We do know we will do whatever it takes for as long as it takes to help Forrest win his battle. And we know that win he will. In the mean time, short visits from healthy friends are warmly welcomed. We miss our tribe, and can't tell you often enough how much we cherish each and every one of You.

With love from Team Forrest,

Mum

Update: Monday, 10/17/11

Forrest had a good day today, all considering. He was able to raise his hand to wave at his doctor, as well as waving feebly goodbye to me when I left. He was able to slowly give me our brother handshake! Everything is difficult for him, but he is in there trying and giving it all he's got, and that's the important part. He's a fighter and he's going to make it through. "It's always too early to give up." Medical difficulties remain as he is still in the ICU recovering from surgery. He is still fighting the infection, which hopefully the quick intervention and continued antibiotics will take care of. We are working on not losing all the great progress he was making before. We are trying to keep him supple and maintain his range of motion for his anticipated future return to therapy and recovery at National Rehab Hospital. He laughed and smiled watching your videos in the facebook group, thank you to all who contribute and to those who continue to post messages and videos. And thank you for the comments on the blog, they are heartwarming and encouraging. Mom, Dad, and Maylin continue to be amazing champions to Forrest and his recovery.

Love,

Austin & Team 44.

Update: 3:15pm on 10/15

Today we begin again.

Forrest's indomitable spirit is peeking through the post surgical fog and already he is winning the hearts of his Critical Care nurses. During his first breathing trial this morning when they turned the ventilator support off he quickly started breathing on his own amazing the respiratory therapist with his large tidal volume. The breathing tube was removed and he continues to breathe well on his own. When asked he will open his eyes and do his best to move his arms & wiggle his toes. We are settling back into the ICU routines that are all too familiar to us. Morning rounds with doctors residents & nurses, tracking every medication & treatment, repositioning every two hours, moving & massaging his arms & legs, watching the monitors & reading your wonderful messages aloud. Austin spent the night bedside & went with Forrest for a Cat Scan at 5:00 AM, reassuring him along the way. The results are encouraging, but of course only time will tell.

Many cultures & lab results are still pending and the plan will evolve over the next few days & weeks. For now we count our blessings. He is alive, he is able to understand us and knows that we are always by his side. We are eternally grateful for your unending love, prayers, encouragement, and most of all your belief in Forrest and confidence that he will heal, he will return to his home, his friends, his future. 

Last week was the best we have had since March. As I sit with you now Forrest, I see a quiet determination alive in your eyes. We will never give up, never surrender. No matter how long it takes or what obstacles we encounter. Together we will go over, under, around, or straight through them. We are still on our road home. We will get there and it will be all that we dream of.

Love,
Mum & Team 44

MaMa Bear + Sara's Bear keep Forrest company in ICU.

Update: Friday, 6:00pm, 10/14/11

It breaks my heart to tell you but Forrest has suffered another unimaginable setback. After several days of unexplainable decline, it was determined that his skull flap has become infected. As I write this he is undergoing emergency surgery to remove the shunt and the prosthetic flap. We are hoping and praying that the surgery is in time to prevent the infection from spreading to his brain. The doctors can't tell us a timeline or prognosis only that we'll have to take it one day at a time.

As he left the ICU for the OR, Ray LaMontagne was singing I Could Hold You Forever on his iPad. Please hold him again today in your thoughts & prayers. With your love and support he will eventually land on his size 12 feet & grace us all again with that lovable lopsided grin. Kent and I are waiting here for him to return from surgery and his brother Austin will stay with him tonight. 

We will update the blog after surgery tonight or in AM.

Shine on my Sunbeam, 
Forrest's Mum

Update: Thursday, 10/13/11

The last four days have taken a downward turn and we've just now had the time to update you all. Forrest has a suspected infection, we're still looking for the location and exact type of infection. It's taken the wind out of him, and after a fantastic week and weekend of progress (with consistent thumbs ups, as well as answering yes and no with both head nods and touching the ipad touchscreen), since Sunday night his responsiveness has greatly declined and he's been unable to use his hands and legs like before. The posturing returned today which is troubling. We've been running cultures and haven't found anything yet. He's going over to Washington Hospital Center in a few minutes for a Cat Scan and evaluation by neurosurgery. We need to rule out the possibility of a shunt or cerebral spinal fluid (CSF) infection, which is less likely this far out from surgery, but the shunt will likely need to be tapped to take samples of the CSF. They will decide after reviewing the CT if he needs to be admitted to the Neuroscience unit overnight at Washington Hospital Center, where he was before.

Despite it all he's still able to laugh at Anchorman and smile watching videos of his friends encouraging him and telling stories(keep them coming please!). With monumental effort he gave me an ever so small fistbump today. He's faced and overcome more difficult obstacles and he will overcome this one. Keep him in your prayers.

Love,

Austin and Team 44

Update: Sunday, 10/9/11

This nine month odyssey has taken our family to many strange and sometimes terrifying lands. It has alternately plunged us into physical, emotional and spiritual despair and catapulted us to unimaginable heights. We have been gradually stripped of all our defenses and are learning to live life fully in whatever the present moment brings us. Daily we continue to count our blessings. Some days, it has been a short, though powerful, list; Forest is alive, our family is intact and so there is still hope. This last week the list is bountiful. We have been blessed with a string of small triumphs, like a child's building blocks each accomplishment stacking one on another reaching to the sky. After months of waiting, praying and reaching out to Forrest, he is starting to respond to us, expressing his determination and revealing his own "unconquerable soul." After so many months of darkness, we are beginning to see Forrest Shine Again. Let me share a few of Forrest's triumphs this week.

On Monday, his speech therapist was trying to determine if Forrest could read. She took two items a Mercersburg lacrosse glove and a pen, wrote both words on the white board and placed the items on his wheel chair tray. Then she pointed to the word "glove" and asked Forrest to point to it. He obliged her, stretching his shaking hand toward the glove! After a couple of repeat trials with different items to confirm his ability to read, Forrest tired of the exercise and reached instead to take the marker from her hand. Previously, every time he has tried to get a marker to the whiteboard to make a mark, his hand shook so hard that he couldn't get the marker near the board. This time he had the strength to push through the tremors and drew a long green wavering line across the board. The therapist was ecstatic. She took another marker and printed "FORREST" across the top of the white board. "Come on Forrest, lets write your name." She shaped a dotted "F" for him to trace and placed her hand over his to help steady his hand and trace the letter. Forrest had his own plan. He slowly shifted his trembling hand to the right and began to shape his own "F"." Then he made two more squiggly "F"s. That's our Forrest!

On Thursday Austin came to visit his brother, having stayed away as long as he could to get over his cold. It warmed my Mother's Heart to see them together again. Over the past six months, Austin has spent endless hours coaching Forrest, holding his brother's hand in his to form the shapes of their secret Brother's handshake and pretending to thumb wrestle over and over again. At last, the memory surfaced AND Forrest was strong enough to reward all of Austin's efforts with an animated rendition of their brother's handshake and a genuine thumb wrestle. The love and trust which has grown even more powerful and true between our sons is a magical thing to witness.

On Friday, a group of 20 students came to watch Forrest work with his therapist. We gave permission with the understanding that if this large group seemed to add any additional stress to Forrest's effort's they would leave the gym. As Forrest approached the double glass doors into the gym, we could glimpse the large group gathered there. The therapist opened the doors and all eyes shifted to Forrest. There was the slightest hesitation, then slowly Forrest reached down for the first time and wrapped his trembling hands around the wheels and began to propel himself into the gym. His therapist face lit up and he waited patiently as Forrest wheeled himself forward inch by inch into the room. The set of his jaw clearly communicating, "Bring it on." It was exhilarating to watch this session and to see that Forrest can still command an audience.

Friday was a pivotal day for Forrest. With two therapists escorting us, Forrest made his first "outing," his first trip (that wasn't an ambulance transfer) outside of a hospital since March. We journeyed in an NRH wheelchair access van to the National Aquarium in DC. Austin has been volunteering there 2 Sundays a month and had all the logistics worked out for his brother's visit. We were graciously received by the Director and Curator and Forrest clearly enjoyed the marine life and the simple pleasure of breathing outside of a hospital for a couple of hours. It gave us all a greatly appreciated break from the hospital routines that have become our daily lives.

Friday night brought yet another first. With his Dad's coaching Forrest caught the nerf football. Though his left hand is still tightly clenched, he is gradually regaining more control of his right. With dogged determination and three tries, he was able to release the ball as his arm extended and toss it back to his Dad. The whooping and hollering that erupted in the room would have rivaled a Redskins touchdown! Today is Kent's Birthday, and I'm sure that throw was the best gift Forrest could have given his amazing "Pops."

Kent, Austin, and Maylin will be carrying the Team Forrest Flag this week, as I head out tonight for a business meeting. It's difficult to be away even for a few days, but I know you're in the best hands imaginable, Forrest. And your friends still keep you in their thoughts and prayers. Their visits, messages and videos are an increasingly critical link to your past and your future.

Thanks to the Woffords, Tom, Sally Pont, John & Jacob, Corina, and Jay for your visits. You added so much energy and enthusiasm to our week. And hugs to my family and Girlfriends who keep me afloat.

With love,

Mum

Writing with his Speech Therapist

Success!

Off to the aquarium!

Forrest picturing himself back underwater diving again

The wonderful National Aquarium aquarists showing him a 1 year old Loggerhead turtle

Dolphin Quest Bermuda

Throughout our journey we have been blessed with such incredible support and encouragement from our families, friends, community and colleagues. Last Sunday, our Dolphin Quest Bermuda community embraced Forrest's cause in the most amazing way. They partnered with the National Maritime Museum to host a fundraising event (featuring a dolphin show, bake sale, and raffle) to raise money for WindReach Bermuda in Forrest's honor. WindReach's mission is to enrich the quality of lives of people with special needs. Like NRH in Washington, DC, WindReach provides adaptive sports programs for children and adults in Bermuda so that they might have opportunities to participate in a variety of sports and activities. For more information, their web site is www.windreachbermuda.bm.

More than 300 people turned out for the festivities and the Dolphin Quest Bermuda event raised $5,434 for WindReach! Forrest sat in his wheel chair at NRH on Sunday and via skype watched the entire show. We were all deeply touched by the generosity and kindness of our DQB Crew Members and the enthusiasm of the entire community for this important cause. At the end of the performance, Forrest rallied and gave the DQB Crew his trademark thumbs up.

We continue to be impressed with Forrest's daily efforts. And we know that he is impressed that in the last month you (his friends, supporters and fans) have raised over $10,000 for adaptive sports programs. And that's in addition to your generous donations to Shepherd and UVA TBI programs. Forrest continues to be a role model and a mentor to many of us, who previously had no comprehension of the impact that traumatic brain injury has on individuals, their families, friends and communities.

Although we sometimes struggle with our evolving role as Team Forrest, we continue to embrace it, and with your support we know beyond a shadow of any doubt, that Forrest will prevail.

With boundless love and gratitude,

Mum and Team Forrest

Kelsie, an 18 year old adaptive sports athlete, enjoys working with dolphin behaviorist Krysta and meeting Ely during the fundraiser!

Update: Tuesday, 10/4/11

Intro for tonight's blog: Forrest has had a good few days, Mom has been his champion and protector as always while I've been sick. She wanted to fill you all in on his progress in her own update soon. Tonight's blog is by one of Forrest's past teachers, Tom Sweitzer, who taught Forrest acting and music at Hill School. He's been an amazing mentor and friend to Forrest for many years. He's been working with Forrest providing Music Therapy and his recollection below is powerful and speaks to the valiant strides Forrest is making every day.

Love,

Austin

From Tom:

When you have taught a person throughout their whole childhood you look into the eyes of this now adult and still can see that little child. This last Sunday in the eyes of Forrest I saw the boy I taught many years ago and the man emerging through this tragic scenario.

As a Music Therapist we clinically look into how music can help a person with physical, mental, emotional and spiritual needs. This last Sunday we worked on helping Forrest find his breath by using a recorder, an instrument he handled at least a couple hundred times at Hill School. With limited ability to move his hands, and arms I assisted him by holding the instrument, talking him through his breath and then with permission from Rae to actually assert pressure on his chin to help him unclench his jaw allowing space for the recorder to sit between his lips. For at least 10 minutes we tried to get a sound from the recorder, and then toward the end of the session there was this moment.

This moment where the MAN came to the surface and that athlete, that actor, that lady’s man said to me without words, “Enough! I got it.” I rolled myself away from the wheelchair and allowed him to take over. Together Rae, Kent and myself witnessed a slow shaking hand taking the recorder lifting it up to his own lips, lowering his lower lip just enough to put the instrument in his mouth and then a breath through his nose was heard and then 1…2…3…4..Small, faint musical pitches were heard, then one more. He slowly put the recorder down and we all cheered.

What is hard to see sometimes with TBI is there is a full person in there. Music is not only the Universal language, but also a form of communication that reaches into places that words cannot. This little triumph is as big as a planet. It reminds us that Forrest is running and playing inside. He is climbing a mountain that is very big, but through the most loving family and friends and now perhaps a little music he’s getting closer to the summit – HOME.

This November A Place To BE Music Therapy in Middleburg will honor Forrest’s fight for life. We will be selling Team Forrest Hats and will have special displays at our center reminding us that he’s still out there preparing for the next part of his life. More information to come.

I am honored to be a part of this child’s life and to witness a Mother, Father and Brother who exemplify compassion, patience, love and FAMILY.

Love,
Tom Sweitzer

Forrest taking the recorder to use by himself

Forrest playing the xylophone with Tom

Update: Sunday 10/2/11 (Only 17 hours late of our own goal.)

Forrest and I had a good weekend together. Unfortunately, brother Austin has been sick, so has not been able to be with Forrest this weekend. Mom had construction to check on at the farm, as we modify the house to accommodate Forrest’s needs when he returns home. I got to spend many hours with Forrest this weekend, which I enjoyed greatly. I had talked with him last weekend and had stated that if he can do one new thing a day, just one,it would be gigantic in the end. He evidently heeded his Dad, because he is doing many things that we had not seen him do in months.

One of the things that he was able to do was to participate with Tom Sweitzer, who has become his music therapy instructor. Tom worked with him last weekend and again this Sunday morning. Forrest worked on the xylophone and also on the recorder. Forrest and Tom worked on breathing in and pushing out. Forrest took the instrument from Tom’s hand, still slowly and with tremors, but he was able to grasp it and blow and make a musical note with it. This is the first time he’s been able to do that! The thing that impressed Tom, as well as mom and me, was that he actively wanted to do it and was active in the role of reaching for the instrument. More exciting news about this coming soon from Tom!

Forrest and I watched the Redskins game. He was very interested in the game, and upset (along with his dad) when they almost blew the lead at the end. But they held on to make it work. He had several things he thought were funny, and is responding to much more subtle humor than he has in the past. We see this as a really good sign as Forrest regains his fun loving personality. Although he still hasn't spoken since May, he smiles more often and is definitely engaged and interested in the conversation.

Forrest and I also worked on communication with the iPad; and while he has trouble reaching out with his fingers, he was able to utilize the iPad with his fist and respond to several different questions with increasing clarity. He also actively reached for the iPad and wanted to communicate, which is again, a new thing.

So, Forrest continues to make slow but steady progress on a variety of fronts, including motor skills and cognition; he still struggles with his movement disorder, but has improved in his swallowing, and had only one emesis episode this week. We all see these as very positive signs and look forward to him continuing to make progress at National Rehab Hospital as he works around the clock to rebuild his life.

Thank you for your help and encouraging words over all these months.

For Forrest and Team Forrest,

Dad

44, Dad, and Sundance in the Family Room celebrating the Skin's win on Sunday!