Update: 2:00pm on 11/15

Forrest had another surgical procedure on Saturday to balance the fluid moving between his brain and his abdomen through the shunt device. Further down in the wall of his chest, the shunt now has shunt assist devices that will help regulate the pressure so there will not be such dramatic drops in pressure as we had seen previously. These devices were implanted by Dr. Armonda on the weekend; the surgical procedures went well, Forrest was recovering from them, and there have been adjustments to the shunt through the course of the weekend and x-ray follow ups … so it has been a busy weekend, which is why Team 44 hasn’t posted.

Grandma Norma and Aunt Bev came and visited Forrest over the weekend and for the early part of this week. Forrest was very attentive and focused while Grandma Norma read and showed him the Hill School yearbook from 2007 with many of his friends as they looked 4 years ago. He enjoyed listening to Norma’s stories about Grandpa Doc and her visiting him at Hill School. As usual, he was also very attentive and interested in the stories, videos, pictures and messages from his friends.

We are hoping, with the shunt assist devices in place, that we will be able to bring the fluid in Forrest’s brain into a steady state that will allow him to sit in a chair-type position and therefore once he is stabilized there, he’ll be able to return to NRH and his rehab.

We were hoping for a Thanksgiving with Forrest attending out at the farm, but it doesn’t look like that’s going to happen; we’ll hope for Christmas now, and see if Forrest can make further progress in his rehab. I know Forrest is looking forward to some of his friends visiting when they are home from college; please contact Austin or Maylin on how that scheduling is going as we progress through those dates. We particularly appreciate Cousin Lisa and husband Lee transporting Grandma Norma and Bev around this weekend, helping out as they often do.

So, Mum continues being Super Mum and handling all things Forrest and Austin is busy still splitting his work between his internship at the National Zoo and Team Forrest. We are hoping he continues to survive bicycling in Washington, DC traffic. Dad, who was able to spend a lot of time with Forrest this weekend, has to go off to his equine meeting and give some talks; he will miss Forrest and Team 44, but we are moving forward and we continue to appreciate your thoughts and prayers. Thanks again for all the communications from his friends, we continue to read them on a regular basis. Hope and prayers to everyone that is Team Forrest.

Sincerely,
Dad and Team 44

Forrest sitting up today for the first time in 5 weeks.

Grandma Norma reading with Forrest.

Grandma sporting her Team 44 pink shirt.

Good News!

While Forrest is holding his own and gathering his strength for his next comeback, we have great news to share!

Forrest and Austin have both been blessed with incredible teachers who have played a fundamental role in shaping their character and their values. Since Forrest was very young, Tom Sweitzer has been a mentor, coach and in many ways a pivotal life line for Forrest. On more than one occasion, Tom helped Forrest find his way when he was lost and confused. Now at this most critical time in Forrest's recovery, Tom is reaching out to Forrest again. Through his Music Therapy and his belief in Forrest, Tom is offering Forrest a beacon of light, a way to reconnect with his past and a way to create a bright future.

Through his work with Forrest, Tom was inspired to establish "The Team Forrest Music Therapy Fund" in Forrest's honor to provide Music Therapy to those who otherwise would not be able to afford it. We are dedicating the Team Forrest baseball caps to this fund. (The article will be on his website below on Monday). The hats will be available at A Place to Be, The Hill School, and Virginia Equine Imaging. We hope you will join us in thanking Tom for his crucial work with Forrest. And support his efforts to provide Music Therapy with others in need.

You can check out Tom's blog posting on October 4th to read about his work with Forrest or visit his web site (http://www.aplacetobefoundation.org) to learn more about Music Therapy and A Place to Be.

We are eternally grateful for the love, support and prayers we receive every day from friends like Tom,

Mum and

Team Forrest

Update: 8:30pm on 11/6

Forrest has been hanging in there in the intermediate care floor. We continue to try to balance the fluid production in his brain with the amount of drainage the shunt is allowing. The variables include the pressure setting on the shunt, the height of the head of the bed and production of cerebral-spinal fluid (CSF). As we have talked about before the rate of his drainage is very important and Dr. Armonda today talked to us about a plan to raise the shunt setting and get him sitting up more with the plan of returning to rehab soon.

Forrest continues to receive IV Antibiotics to control the infection that started this decline. His blood work is doing well and he continues to make slow improvement.

On the home front we continue improvements on the house that will let us manage Forrest in whatever ambulatory capability he can manage when the decision is made to bring him home. Austin made it home briefly with a couple of his friends and Dad got to cook for them. Mom made it home to briefly to oversee construction and see the hunt off. I will try to post one of the pictures Katherine Elgin took of Rae at the Orange County Hunt.

The videos and pictures and emails that his friends send are huge at this point. I know you guys are busy with school work and we do want you all to study and graduate. The high point of many of these long and tiring days for him are the videos and messages from friends. Even when he is down he can still manage a smile for his friends. Austin and Maylin make sure that he sees every one of them.

So our goal continues with all of us pulling together and getting 44 home, smiling, riding, watching football and visiting friends. Please continue to pull together to help us get there.

Dad and Team 44

Forrest smiling at messages from friends.

Update: Wednesday, 11/3/11

Forrest is still in ICU, he has been having a little trouble adjusting to the VP shunt, but he is doing better tonight. He even smiled and watched videos from friends this evening. We're hoping to move out of ICU and down to an intermediate unit tomorrow. We're including a picture below of Forrest and Maylin. We can't stress enough how thankful we are to have Maylin. She has a special way with Forrest, she cheers him up with her easy going personality and they really seem to click. She's really on par with the core team 44, watching his meds, helping turn him every two hours and making sure everything is just so. But more importantly, her good humor and awesome attitude really help lift Forrest's spirits. We and Forrest are so lucky to have her on the team.

Thanks all and have a great night,

Austin and Team 44

Maylin reading to Forrest

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