Monday, October 31, 2011
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, October 28, 2011
Sunday, October 23, 2011
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,
Monday, October 17, 2011
Saturday, October 15, 2011
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.
Mum & Team 44
|MaMa Bear + Sara's Bear keep Forrest company in ICU.|
Friday, October 14, 2011
We will update the blog after surgery tonight or in AM.
Shine on my Sunbeam,
Thursday, October 13, 2011
Sunday, October 9, 2011
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.
Thursday, October 6, 2011
Kelsie, an 18 year old adaptive sports athlete, enjoys working with dolphin behaviorist Krysta and meeting Ely during the fundraiser!
Tuesday, October 4, 2011
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.
Monday, October 3, 2011
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,
44, Dad, and Sundance in the Family Room celebrating the Skin's win on Sunday!