Monday, April 20, 2015

Boston Marathon today! Go Charlotte!

Earlier on the blog we told you about Forrest's friend Charlotte, who decided to run the Boston Marathon in Forrest's name, with a portion of the proceeds going to A Place to Be.  Well, today is the big day!  Charlotte is over halfway through the race, but it isn't too late to donate!  It is an extra special matching Monday, so all donations made today will be matched TWICE!  Here is the link to her page: 
https://www.crowdrise.com/bostonmedicalcenter2015/fundraiser/charlottedavis2

Team 44 rocking our Marathon gear!
Charlotte and "Forrest" checking out the finish line earlier

Thursday, April 16, 2015

A Little Scare and Trip to the ER

Earlier this week, Forrest made an unexpected trip to the Johns Hopkins Emergency Room.  He had been experiencing drainage from an area on his incision for a few days and after consulting with his doctors, it was decided that a CT and visit with Dr. Kumar was necessary.  The result was unfortunately what we had expected – the incision on the narrowest area of his graft is breaking down.  Forrest is on antibiotics and is back to having his head bandaged but we are thankfully able to treat and monitor the area from home - no hospital stay needed at this point!  We plan to meet with Dr. Kumar in a couple of weeks to reassess. 


Despite this little bump in the road, Forrest’s spirits remain high and his smile and charm are quick to appear.  He is continuing with his full schedule of pilates, PT, music therapy, immersion group at APTB, speech/cognitive therapy, studying for his US History final, agility training with Toliver, as well as going to movies, enjoying calls and FaceTime with friends, lunch outings, helping with errands and playing corn hole and many games of pool.

Thank you for all the continued support!
- Team 44

"Hulking" out with Mum's business partner, Jay 
Corn Hole with D-Rock





Monday, April 6, 2015

Embracing This Moment

     After so many highs and lows throughout this journey, it is thrilling to see you doing so incredibly well.  You are stronger, quicker, and your ability to really communicate your thoughts and feelings is growing almost daily. 
    Your friends, therapists and doctors instantly see and feel the difference and are astounded. You are whole. Your voice resonates with confidence. Your humor is sharp and insightful.  While you still move with a limp, there's a healthy bit of the old Forrest swagger in your walk. And though there are still gaps, your memory is improving also. 
    On Friday, Dr. Kumar grasped the difference immediately and we both felt you were ready to see the before and after 3-D CT scans of your skull.  When you see the images for the first time, the gaping deficit of the before image is in stark contrast to the symmetry and wholeness of your reconstructed skull.  
"I had no idea," you whisper.
The before and after CT Scans of Forrest's head is a stunning reminder of the challenges he has faced.

    With your heightened sense of self awareness and growing communication skills, you were able to really talk with Dr. Kumar about parts of your journey. You told him you remembered that some of the doctors who saw you didn't think you were going to make it or didn't think you would be able to have a full recovery. Dr. Kumar replied that the doctors have probably never seen the outcome of this particular series of surgeries before.   He explained to us that when he developed these procedures as a Navy surgeon for patients in uniform he didn't know if or when they would be able to help civilians.  You are the first civilian patient to undergo this series of reconstructive surgeries for a catastrophic cranial injury.
He said now you can show other doctors what's possible and create hope and new opportunities for TBI patients who have not responded to conventional treatments.
    Dr. Kumar told us he is thrilled with your progress and the potential for your future. You offered your hand to Dr. Kumar and told him gravely, "Thank you Sir for your good work".  Smiling, Dr Kumar replied,  "I couldn't have done it alone. You're a fighter, Forrest. We did this together".
    Although your father and I have studied all of your CT scans, we have never been blessed with this vantage point.  When I look carefully at the before and after images of your skull now, and looking back remember all of the setbacks and complications, I don't know how it is possible that you not only survived, but accomplished all that you have.  Without the love, prayers and faith of friends and family, without the hope and joy that Tom and music therapy brought us, I don't believe we would have made it to see this miracle reconstructive surgery succeed.
    There will be more tests, CT scans, MRIs and 6 to 9 months before we will know if all of the bone grafts will take and heal. There will likely be more challenges and surgeries in your future.  But hopefully we have seen the last of the heart wrenching setbacks and the major life threatening operations are behind you.  Now we can focus our energy on rebuilding your life. And by living a life full of joy, passion and purpose you will surely help others find their own path, their Place To Be in this world.    
There were so many joyous moments this week, moments shared with friends and believers who make your journey, this life, one overflowing with love, laughter, and joy.

Here are a few of the highlights:
Shannon Davis and her beautiful daughters visit
Forrest asks Charlotte to wear his lucky APTB bracelet while she runs the Boston Marathon!!! Her family is matching the donations she raises for the Boston Medical Center as a gift to A Place to Be in Forrest's honor! Isn't that amazing?!? Please check out her page and help make this a really big check!!  https://www.crowdrise.com/bostonmedicalcenter2015/fundraiser/charlottedavis2

Here's a video of Charlotte and Forrest making their deal!  https://youtu.be/KjPTglugJxU

Tori, Forrest's great pal since kindergarten, reminisced about the good ol' days and had a rousing game of pool!
We celebrated Easter Sunday with Del & Mary at Cornerstone Chapel followed by Brunch!
Life long pal, Madison, and Forrest share a laugh and practice their dance moves.  https://youtu.be/BlgQgnXgsPE

With a heart overflowing with gratitude for this new blessed opportunity you have been given.  
Mum

Sunday, March 29, 2015

Grateful

Home....Friends... Sunshine... Family...Music... Support... Exhuberance... Joy... Laughter...
(And to be honest, some tears and frustration too) but overwhelmingly grateful for your faith in Forrest and for this healing, healthy, happy time.  Here is just a sampling of this amazing first week home:


Pilates with Kay.  Tears of joy when she saw your new Noggin and your new abilities!


Michael's visit and gift of a "Voyce" fitness collar for Toliver!


PT & Work out challenge with Del! "Amazing". 


A surprise visit and hug for Nurse Karen who never lost faith in you.  


Lunch out with Matt sure beats hospital food! 


Filming with Tom for High Notes the documentary film about the impact of music therapy on your life. 


Jam'n & composing with JP & Nathan....
Music to my ears.

There's no way to know what the future holds, but we know it will be special.  Counting each and every moment's blessing.

Mum

Monday, March 23, 2015

Home!

Earlier today, Dr. Kumar delivered some magical instructions to Forrest..."Fly Away! Be Free!"  We weren't about to argue, so it is with great excitement that we announce that Forrest is home!!!  We are so happy to be back at BrightWood! 
Here is a link to a special message from Forrest: 
https://youtu.be/d2lIzcVWNuI

Leaving the hospital!
We stopped to see Tom on the way home and he delivered this special poster from APTB
With Finn at BrightWood 
Selfie!

Sunday, March 22, 2015

Poster Child

I haven't thought of Forrest as a "child" in a long time. However we have often thought of Forrest as emblematic of the many young people we have met with courage, resiliency and compassion beyond their years.  But we were recently told by a phycician that "Forrest is the Poster Child for everything that can go wrong in a hospital".  I don't believe he meant that Forrest was in any way jinxed, just that his case is so incredibly complicated and he has spent cumulatively almost 2 years in seven different hospitals. Things happen...

During Forrest's extended hospitalizations we've encountered wonderfully dedicated, talented, and caring medical professionals. We have seen medical miracles happen before our eyes. We have watched bleary-eyed and distraught as Forrest has been saved from almost certain doom on multiple occasions.

 But we have also felt the terror and helplessness of being captive in hostile and dangerous hospital environments where one moment of distraction or inattention can result in a human error with catastrophic consequences.  It's a flawed system because, no matter how sophisticated and excellent the hospital standards and procedures are, in the end it comes down to human oversight.  

A few of the errors we have encountered almost cost Forrest his life.   But God and his earthly angels have always somehow been there for Forrest at the exact moment he was in peril, and he has survived . And so it was that on Friday Forrest was exposed to a medication known to be life threatening to him. We caught it.  Doctors were notified, specialists called in, and a battery of daily tests have begun to determine if his body will react adversely, as he did in the past, to this medication.  Will this medication affect his surgical site or healing? Usually the dangerous effects become apparent by blood tests in the first few days, and so far his blood counts are stable.  Though my heart still races just thinking of it, we are all beginning to breathe again.  On rare occasions this exposure has been known to have a "delayed onset", so it will be several weeks before we know for sure and can put this risk behind us. 

We've debated whether to share this incident in the blog and frankly I've been too upset to write anything at all. In the end we decided to share it because mistakes are part of the reality of any prolonged recovery. Hospitals are wonderful places of miraculous healing.  But even the best hospital in the country is still a dangerous place to be.  I hope that reading about Forrest's journey helps someone else understand how critical it is for every hospitalized patient to have a vigilant advocate by their side. Even with the best doctors and nurses in the world, we can't abdicate responsibility for our own medical safety and care. It's not only okay, it's critically important to be informed, to question, to be involved. And when mistakes happen, and they will, it's essential to work collaboratively with the hospital, the doctors, nurses, and specialists to define the risks, minimize the damage, find the best solution, avoid the catastrophe and .....get out of the hospital as soon as possible!  And that remains our hope and plan. If Forrest's blood work is still stable Monday morning and the last drain can be removed we are Brightwood bound!!!

Grateful for every day,
Mum & Team Forrest


Forrest celebrates Tami's Birthday in the hospital 


The best plan, no matter what life throws at you, is to keep moving!  So Pops Forrest and Toliver take over the hallway for soccer practice!

Go 44!!!




Thursday, March 19, 2015

Ice Cream Makes Everything Better!

Although the "grumpies" have visited briefly today, Forrest is having a good day.  Dr. Kumar is checking the surgical site twice a day and although he is pleased overall with how it looks, we won't know for sure for another 48 hours how well it is healing.  Two drains were placed in Forrest's noggin yesterday and if all continues to go well, those drains will come out this weekend and Forrest could be homeward bound on Monday.

We were able to get Forrest out of his room today!  It was a bit of an adventure maneuvering through various doors, elevators and groups of people with the wheelchair, Toliver and the IV pole with its assortment of lines attached to Forrest, but we made it downstairs to a cafe where Forrest enjoyed a "nommy nummy" pizza and dulce de leche ice cream for dessert.  He was his usual cheerful and talkative self, telling us jokes and stories and charming a nearby group of ladies that were admiring Toliver.   When we returned to 10N, we took advantage of the great Teen Room in the unit and played a competitive game of Wii Bowling with Forrest eking out a win by 4 points!

Thanks for all of the continuing messages of encouragement and support!

- Tami and Team 44