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




Wednesday, March 18, 2015

Post Op Laughter

Our prayers were answered today.  

Forrest made it safely through surgery this afternoon. Dr Kumar was relieved that the skin breakdown only occurred on the left side where there was more healthy tissue to work with.  If it had happened on the right side he felt he would have had to take a skin graft from Forrest's thigh to repair it! If we can avoid any more complications we could be heading home Monday!

For now we are happy to be back on 10N. Instead of napping, he can be heard chuckling to one if his favorite movies, Ferris Beuller's Day Off! 


A Okay.  

Thanks all for your love and prayers today and every day. Couldn't do it without you!

Mum


Feeling Safe

You were in fine form this morning Forrest, belting out a mash up of The Sun Will Come Out Tomorrow and This Is The Moment, during group FaceTime with Austin and Tom. I don't think there could have been a more upbeat send off to surgery.  



In pre-op the nurse asked you if you had any questions.  You answered "Nope. I feel safe with this new head.  Even though I have to have another operation, I'm happy because I feel safe and I know it's going to be fine."  Where do you get your faith and confidence? 

When you rolled into the OR in your wheelchair with me the first thing we saw overlooking the operating table was a gigantic flat screen monitor displaying the 3-D CAT scan of your newly reconstructed skull.  You grinned  ear to ear and announced with pride to the room full of doctors and nurses, "There's my new head! That is all my own bone!"

You've been through so many surgeries and setbacks, but you are surrounded by love and prayer.  Your faith, your eternal optimism, your wacky sense of humor and your joy sustain us.  You are safe, Forrest. And soon your Noggin will be healed and we will all be BrightWood bound!

With a grateful heart for the love and prayers swirling around Forrest. I'm certain the OR is humming now with Regae music and positive energy. 

Can't wait to hear what you'll say next.  

Mum & Team 44

Tuesday, March 17, 2015

Staying Strong

You made the most of this day, Forrest. During morning rounds when Dr. Kumar  thoughtfully explained to you exactly how he planned to fix the problem with your scalp, you remarked,  "That's comforting,  because I know you are a good and practical surgeon and you will get it done!" I doubt Dr. Kumar has ever been addressed exactly in that manner before...but he smiled broadly and agreed he would "get it done"!

 You entertained the physical therapists and nurses by singing a good part of the day. Off to the gym in the afternoon, you and Toliver worked on your balance and stamina until Toliver collapsed on the mat. We played cards and cheered for Nick's lacrosse game, even though Brown lost in overtime.  You talked to friends and your brother on the phone.   You and Tami read your many Facebook and blog messages, which encourage us all to know so many people care about you and your journey.  Then you showered and shaved to Bob Marley singing One Love.  



After giving your pal Toliver good night bunny ears, he snuggled in your lap, reluctant to leave you for the night. I overheard you whisper to him, "It will be okay Toliver... be strong".  We will all take your words to heart, Forrest.  This too shall pass, and we have to be strong to keep up with you!

Sleep well Darlin. We are one day closer to coming home. 

Love & Peace,
Mum