Giving Thanks

So many blessings to be thankful for!  Home, incredible family, loyal friends, faithful prayer warriors, skilled doctors & sugeons, caring nurses, talented therapists & aides, Saint Toliver... Team 44!  After a month in the hospital, Forrest's pain, all that uncertainty, ups and downs, worry, sleepless nights....to be suddenly HOME is in a way unnerving.  We've been surviving hour to hour on worry, adrenaline and coffee, now suddenly... All this space, quiet, we can breathe. It's a huge wonderful transition.  Even this transition was blessed by great friends!  We hadn't really believed we would make it home for Thanksgiving and hadn't a moment to shop or plan. 

Our Elgin Angels, Carina and Kaki delivered all the delicious side dishes, and Martinelli's sparkling apple cider (which Forrest drank four glasses of!) for our Thanksgiving feast! Maley baked us a homemade apple pie and Pops roasted a beer can turkey on his grill. We had a feast for sure!  

Nothing like a long hospital stay to help you cherish life's simple pleasures! A hot cup of tea, the remote, and an afternoon of football games! Only thing missing was Austin!  He'll be home in a couple weeks for Christmas and our little family will be complete again. God bless all our earthly angels who have watched so carefully over Forrest and our family throughout this journey.  

Our plan now is to get back to living and healing. As long as things are quiet we will update weekly. Forrest is planning on singing in the APTB Holiday Recital, so if you're local we hope to see you next Friday evening December 4th at Salamander Resort. Happy Happy Thanksgiving!

Team 44

We are HOME!!!

Prayers ARE answered and miracles DO still happen!!  

As Forrest exclaimed when he emerged from the hospital into the sunshine for the first time in 29 days:

"I'm Free!  I'm Alive! I'm Happy! And I am going home!!! Happy Thanksgiving, everyone!!!

Forrest took this selfie in our great room at BrightWood today at 4:44!  We are extraordinarily thankful for the amazing surgical and medical care Forrest received at Johns Hopkins, for Tami's round the clock support, and for your love, faith, and prayers throughout Forrests stay at Hopkins. 

Forest telling one of his many fantastic nurses, Dylan, goodbye today. 

Our prayers go out tonight for Joshua, his beautiful family and all the other families still in hospital on this Thanksgiving Holiday. 

With love and gratitude overflowing,

Team 44

Free!

Forrest is homeward bound!  BrightWood here we come!  Thanks for all of the prayers!

First Post-Op Lap & Last Day at Hopkins?

You made it Champ through a challenging Post-Op Day 8, without even one dose of oxycodone!  

And when PT didn't make it to your room this afternoon, we took matters into our own hands!  Ben and Toliver did a great job of spotting you for your very first lap around the unit since your big surgery last Monday. 

The lap understandably tired you out a bit, but you made it back to Room 48 in good shape! And with enough energy to send a message from you and Toliver to your friends, family, prayer warriors, and Johns Hopkins medical team: 

A rousing game of chess leaves you and Ben in stalemate,  each with only your Kings remaining! 

 

And you and Tom had a blast using Face Time to practice your song for the Holiday Recital on December 4th at Salamander.  

Only ONE more hurdle before we break out:  Dr Kumar wants to lay his own eyes on your Noggin one more time, tomorrow morning, Day 29.  If he gives you and your Noggin his blessing...we are BrightWood Bound!!!  Stay Tuned...

With love and gratitude for your prayers, visits, encouraging messages, blog comments, videos, Face Times, pumpkin bread, coffees, friendship, and most of all...your unconditional faith in Forrest,

Mum

Two More Hurdles Cleared

Bolstered by Pops, Tami, all the amazing week-end visitors, and countless prayer warriors you attacked this day with renewed energy. 

Toliver trots alongside your gurney early this morning and impresses the transport team by pushing the remote door openers. The technician at interventional radiology is visibly disappointed that Toliver is not allowed into her operating suite.  Surgically placing the central "Hickman" IV line will allow us to safely administer the intravenous antibiotics at home for the next six weeks. Although this is the third time we have tried this approach, now that most of the hardware is removed from your skull, the antibiotics should be able to clear your bone grafts of any lingering infection.  Hickman  Central IV Line in = First Hurdle cleared! 

After the Hickman is placed Dr Kumar arrives to remove both of your surgical drains. A painful procedure for sure so a little extra pain medicine is ordered.

"That wasn't so bad," you reassure Dr Kumar!  Then Dr K shows us today's post op 3D CT scan of your new Noggin. 

On the left is the top of your skull before last Monday's surgery showing your bone grafts from March and multiple titanium plates "knitting" all the pieces together.  The gaps between the bone provided opportunities for the skin to break down.   In today's image on the right, sections of your ribs have been used to fill-in most of the open spaces so that the vast majority of the hardware could be removed. While it does still look a little bit like a patchwork quilt, it is a nearly solid and complete cranium constructed almost entirely of your own bone! With your skull 90% complete and with the shunt totally clamped off, our hope and prayer is that your body and CSF will establish its own new equilibrium.  Dr. Kumar knew this was going to take multiple surgeries and that it would be difficult, but he is clearly pleased today with the CT and with your appearance. CT and clinical progress approved = Second Hurdle cleared! 

Dr. Kumar and you have an interesting conversation reminiscing about the first time you met. Dr. Kumar remembered that you seemed to have trouble processing language fast enough to keep up with the conversation. You agree that it was hard to figure out what people were saying fast enough to respond in time. But now you exclaim, " I get what you are saying, quick as a snap! " Dr Kumar laughs out loud and agrees. He wants to lay his eyes on you Wednesday morning and if all your incisions look good and you are still "quick as that snap", we are BrightWood bound on Thanksgiving Eve!!!

Saint Toliver has been so patient. Wednesday will mark 30 days in 12E Room 48 for you and Tollie.   His eyes say it all, "When Champ can I take you home, already"? 

Soon Toliver Soon.  

God Bless,

Mum 

 

"Thumbs Up" for Weekend Visitors!

Forrest had great visits from Kim Tapper and APTB friends Megan and Abby on Saturday.  He was able to get out of bed and sit in the chair for an hour and a half during the visit!  The pain in his ribs was quite bad at times and the pain medicine makes him drowsy, so he napped occasionally throughout the day.  He and I watched some football together, but some intensely painful episodes made it hard to position him where he could be comfortable.  Finally last night, we got the position and the pain medicine working together and he had a quiet night. 

As we often do, we got a hospital sitter to watch over Forrest last night so Tami (Caregiver Extraordinaire) was able to get some rest. SuperMom got a short but well deserved break to go home to BrightWood to visit with sister Lobie and her husband Clarence.

Forrest's Sunday morning and afternoon visitors were from long time chums, Nick Weeden, Whitney Weeden and Alix Morgan.  Nate Chambers and Maley Coombs came up tonight and had dinner with Forrest.  Maley keeps the farm and the horses organized, and has been helping out extra with Martin and the ManCave fish during Forrest's hospital stay.  It was great to have all of these visitors this weekend and are so thankful for the extra smiles and laughs that they brought to Forrest!  

Tomorrow brings a procedure to surgically place a central line for another 6 to 8 weeks of continuously  administered antibiotics as well as a CT scan to see how the new noggin' is doing.  We are hoping to have Forrest try some walking tomorrow and we will continue adjusting the pain meds as well.  But everyday is another day closer to going home!

Pops of Team 44

Lunch with Abby, Megan and Kim, followed by making turkeys out of hospital gloves to go with the stack of
awesome Thanksgiving pictures created by Forrest's Immersion friends at APTB and delivered by Kim to brighten up the hospital room!

Whitney and Nick

Thumbs up with Alix

Maley and Nate

Enjoying a Skype session with Austin while sitting upright in the chair!

A Good Day

Hey everybody, it's Forrest.  Today I've been chillin' here at the hospital.  The pain has been a whole bunch better today and I was able to get out of bed to sit in a chair for an hour and a half.  Here are a few pictures from my day.

I let Mum win this hand of Blackjack, but I won the rest!

My real cool nurse from today, Christine. 

FaceTime with Austin, practicing our eyebrow raises!  We are planning xbox games and Bagel Bites for Christmas break!

Ups and Downs

Day Three has been full of ups and downs and some pretty awfully painful episodes. We're about out of steam so we'll just share a few of our Ups:

Forrest has loved hearing all of your blog and Facebook messages and each picture and fun message on the new FB Community page Paws Up For Forrest! Thank you Thank you! I wish we could respond to each and every one!  Aren't we blessed to have so many wonderful animals in our lives!

Big accomplishment for the day Forrest clawed his way out of bed and stood for the first time since surgery with beautiful and cheerful PT Brianna.  The first thing he did was pat her on the shoulder.  Dr. Kumar was there in person for the momentous occasion and remarked, "Forrest, I beat you up pretty bad, but couldn't that keep you down for long!"  While there are still huge hurdles to overcome, it was great to hear Kumar observe that he has never seen your Noggin look this good before!

She sure was pretty but how could she compete with this face? 

Del sent you his funny sad "I miss working out with Forrest face".  So you returned the favor:

This is your funniest thumbs down , "This sucks I want to go home face" which we rarely see and has never before made the blog... for obvious reasons! 

We miss you, Del!!!

The best part of the day might have been  Face Time with Ben Tom & Kim at APTB today, which put your smile , perhaps still a little strained, right back on your charming face:

So as we sign off tonight we have a special request for our many loyal prayer warriors. Please keep Forrest in your prayers and if you could please add a prayer for Joshua and his family. Their journey with TBI began last May. Like Forrest he's had many complications and setbacks and he began another series of major surgeries with Dr. Kumar just last week.  And like Forrest, he's a fighter too. Sadly, he and his family spent his18th birthday today back in ICU with more complications. So please include Joshua in your prayers tonight.  

God bless. 

Mum

"I'll be back soon," whispers Forrest

There's no doubt in my mind you will be back Darlin'... and soon.

Your reconstructed Noggin suits your handsome profile beautifully. And while its early, there's no evidence of CSF overdrainage so far.   In this photo the determination is clearly visible in your eyes. Your underlying unsinkable sense of humor is reflected in your smile snd your trade mark thumbs up speaks volumes of your enduring optimism.  

What goes unseen in this photograph is the stabbing pain emanating from your chest wall with each breath or your inability to swallow without an excruciating coughing spasm or your nausea and difficulty breathing when the physical therapist attempted to sit you up.  You are trying so hard to hide the emotional and physical exhaustion that plagues you.  With every labored breath you take my heart aches for you Darlin'. 

I remember an interview you did over two years ago when the journalist asked you what was your secret to staying so upbeat.  You smiled at her and replied, "What I've learned is, that in life there are some way Highs and then there are some real Lows...and sometimes you just gotta wait out the Lows to get to the next High!"  So Forrest that's what we will do.  We will wait out this really painful Low and be back on top again soon.   In the meantime counting our blessings helps.

Blessings like Tami, who is always there for you, and for us, with a cheerful helping hand, a book to divert your attention from discomfort and an all night bedside vigil when needed. Like probably again tonight! 

Pops has lightened our load immeasurably. Driving back and forth for surgeries from his clinic in Middleburg to take the early week end shifts, negotiate with doctors and deliver much needed food and coffee for your team. 

And of course Toliver who rushes to your bedside when your breathing quickens from the pain bringing you his favorite toy. You were even able to throw it for him tonight! 

  

Messages, videos, Paws Up For Forrest pet pictures on FB , and FT with Austin and your pals break up the day and make anything seem possible. Tomorrow will be better, Champ. 

 With love and gratitude for your prayers, encouragement and devotion to Forrest,

Mum

Grateful Hearts

You made it Darlin,  

As Dr Kumar explained last night, it was a brutal surgery and it will be a painful recovery. But you are strong and he is hopeful that this is your last major surgery. That the bony reconstruction of your skull has now been accomplished.  He had warned us though that with your vulnerable scalp it's possible that some small areas may not hold.  We should know in the next 7-10 days and that would require further surgical revision or skin grafting. Additionally when removing one of your ribs the lining of your chest cavity was punctured.  We knew going in this is one of the risks. He sutured the opening closed and daily chest X-rays will help detect any complications that might require a chest drain to be placed.  

You spent the night in ICU with Tami at your side. It was difficult for you to communicate but the two of you are so close, that she was able to understand your level of pain and help the nurses manage your medication. 

You are so strong your vital signs all stabilized quickly and you were released from ICU this morning. Pops relieved Tami early in the morning, oversaw your early medications, and with Toliver gladly accompanied you back to 12 E. Room 48 where are you are surrounded by pictures and decorations from home.  The wonderful ICU nurses were charmed by Toliver and his joyous reunion with you!

So now I sit quietly once again watching you rest, your breathing a little labored, and your pain level back down to two out of 10. Even through all the pain medicine you're able to give the nurse a little smile and pass all the neurological assessments. Ending with what we have all been waiting and hoping for. Your Thumbs up game on spirit. 

With a grateful heart for all your enduring prayer warriors, surgeons, nurses, faithful friends, earthly angels, second chances,  and most of all for your indomitable spirit.  

God bless,

Mum

Surgery Update

We just spoke with Dr. Kumar.  It was a long surgery but he is very pleased with how the cranioplasty went.  He had to take four ribs, so the next couple of days will be focused on pain management and monitoring Forrest's lungs to make sure there are no complications from removing the ribs.  We will update more thoroughly tomorrow.  Thanks for the prayers.
-Team 44

Toliver thanks Dr. Kumar

We have begun again

Forrest spent the long day gallantly waiting in fine form, even with No food or water! Face time with friends, face book messages, videos, laughing at the new fabulous Paws Up for Forrest FB page, practicing his Ukulele, and reading our book together helped pass the time.  

Finally at 4:00 pm an Operating Room opened up and we headed down the all too familiar path to pre-op. Forrest and Toliver's fourth trip this stay, so they are warmly welcomed by the nurses there. 

I think Toliver could probably answer all the standard questions by now! 

Dr Kumar artived and went over the details with us one more time. As surgeons do he put his initials on the multiple surgical sites.  For good measure he added a happy face with what appears to be your trademark crooked smile ( was that a coincidence?) on your beloved forehead. 

You thanked him for waiting all day for you and with one of your goofball expressions sent him and his staff off to the OR laughing.  

Here you go again Champ. With all the extra prayers and love surrounding you today and just a little luck maybe this will be your last major surgery.  Sweet dreams. See you in post op in 6-8 hours.  

Mum, Pops & Toliver 

Post Poned... But still waiting

We were expecting to head to Pre-Op around 6 o'clock this morning.  We have not gotten any official word yet but we heard from another patient's mother, who just saw Dr Kumar, that Forrest's surgery has been bumped back due to an emergency appendectomy. So far we have not heard that it has been rescheduled.   It's good not to be the The most urgent emergency, but it is hard to wait.  So we've been reading your messages, playing video messages, and reciting this prayer that Pastor Ann from Emmanuel Church sent to Forrest for this morning. It turns out to be just perfect: 

Forest has been working on "doing nothing gallantly" all morning!  Thank you all for your continued prayers encouragement and support.  We will let you know when we know something more!  

Trying to sit quietly, but it is not my strength!

Mum

Monday's Surgery

In a couple months and 25 major surgeries later we will be coming up on 5 years into this journey for Forrest.  We hope the effort to finish the reconstruction of his cranium is in its last stretch.  The last three weeks of tests to determine why he is over draining his cerebrospinal fluid have ruled numerous things out but have not given a definitive answer.

Monday's procedure is a estimated 8 hour major one (major and minor being defined by length of anesthesia and proximity to brain) and the goal is to use Forrest's bone to close the areas on the sides of his cranium.  The hope is that not only will that finish the bony reconstructive procedure but provide protection against the atmospheric pressure that may be a cause of the over drainage.  Dr. Kumar and his team will harvest bone segments from Forrest's ribs. Forrest discussed this with me and he decided against having Dr. Kumar create him a new girlfriend named Eve from his rib "due to upkeep costs and Other considerations."

Once the partial struts of ribs are taken and plated into place on the sides of his head. Next comes the concern of the flexibility of the skin and the ability to close the wound with existing skin.  Followers of Forrest will remember last summer one of the major procedures (14 hours) was a free flap of skin muscle and fat from his back that was grafted onto his blood supply in his forehead and throat.  That has been whittled away in subsequent surgeries and it is possible that another one may have to be taken from his leg to provide enough skin.  Whether that is needed at all or whether it has to be done now or in the near future is the call of the surgical team while Forrest is on the table. When Mum asked Forrest tonight if he had any questions or concerns about the surgery tomorrow Forrest replied "No let's just get on with it already!" And so we shall. 

What are the concerns?  Risks from long term general anesthesia (Forrest has done longer procedures), infection (Forrest has beaten numerous bugs that have infected his various failed artificial material cranioplasties), post op pain (this will be significant due to the rib resection but he usually starts refusing the morphine like drugs by the second day post op and goes to Tylenol), blood clots and various other complications (get him up and moving ASAP).  So Mom, Del, Kay, Vinaya, Tami and Toliver are particularly good at encouraging him to get up and moving post op, no matter how much it hurts.
So that is the overview of the procedure.  We are blessed to have Dr. Kumar and his craniofacial reconstructive team and all of the nurses and techs at Hopkins, one of the finest hospitals in the world.  We are also blessed with Forrest's army of friends,prayer warriors and well wishers who if they have a Team 44 green wristband wear it tomorrow!  If not think of 44, always fighting the good fight.
Or perhaps more appropriately as Forrest, Nathan and JP sing, "Just keep walking".  https://www.youtube.com/watch?v=4hiXEU1TB-U 
Proud to be part of Team 44
Pops

JP, Ben and Daniel jamming with Forrest in room 48 today! 

Life long pals Peyton, Corina, and Sarah brighten up the day and bring their special comaraderie to Forrest.  

With so much love and support we cannot fail. 

Laughter IS the Best Medicine

We have a surgery date!  Dr. Kumar met with Forrest and Mum yesterday and confirmed that Forrest is scheduled for surgery on Monday.  It will begin at 7:30 in the morning and is expected to take 8-10 hours.  If we avoid any complications Forrest might just make it home by Thanksgiving!  If not we will give thanks for our many blessings here.  

Today marked 3 weeks of bed rest for Forrest.  We are so thankful for the hours of video chats and online therapy sessions that have kept his brain and body active.  Forrest had a great yoga session today followed by a special visit!  Abby and Megan, two of Forrest's Same Sky cast mates journeyed to Baltimore today (with Megan's mom, Tina) and spent many hours bringing much needed sunshine to room 48.  They shared stories of "Flat Forrest", the cardboard Forrest that traveled with the Same Sky cast to the American Music Therapy Conference in Kansas City this week.  Sounds of laughter carried into the halls as Forrest and the girls swapped tales and caught up on the past few weeks.  Even Toliver seemed to have a little extra twinkle in his eye all afternoon.

The girls brought Forrest a t-shirt from a BBQ place they ate at in Kansas City. 

Kisses!

Thanks for the continued support and prayers.

-Team 44

Inclusion Comes in All Forms

Forrest,

Today we found ourselves once more reminded of the amazing people that are a part of your life.  You are supposed to be in Kansas City, getting ready to perform with your Same Sky cast mates tonight at the American Music Therapy Association conference.  Instead, you find yourself flat in bed, experiencing it from afar.  But what an experience they are creating for you, Forrest.  Cardboard Forrest and Toliver have been popping up in videos and pictures from the trip.  From "dancing" in the background during a Same Sky flashmob on the airplane to "sharing" dinner with Ben and Veronica, you have been included in this trip.  The video messages, texts, photos, blog posts and Facebook messages from the cast have helped you feel a little bit like you are there with them.  Through the wonders of Skype, you were able to join your friends for rehearsal this afternoon and you will be able to watch the whole show tonight from the front row.   Although we know that this isn't the same as being there and experiencing it in person, we are so thankful for each person that has made it possible for you to be a part of it.  So when the lights go down tonight and the music starts, your heart and spirit will be right there on stage, alongside some of the most courageous people in the world.  Good luck tonight Same Sky, we love you!

- Tami and Team 44

- No surgery date set yet, we will keep you posted.

Silver Linings

Well Darlin Forrest, the bad news is the last three surgeries and 2 weeks in the hospital haven't resolved the problem of your CSF overdrainage.  The good news is that we have ruled out some awful possibilities.  Once the shunt was completely closed, the docs have confirmed the shunt is not causing the problem.  And  after reviewing a dozen of the previous CTs, that your Pops had stored on his lap top, and reviewing last Friday's high resolution CT and MRI, the specialists here are confident that you do not have a CSF leak.  Whew...Silver lining: no new huge underlying problem threatening your future.  

The doctors are visibly relieved, but you still have the problem of CSF overdrainage placing tension on your plates and bone grafts that will eventually cause the skin to breakdown. But now we have The Plan:  move up the big surgery ASAP.  We are hopeful that once Dr. Kumar completes the reconstruction of your skull using three of your own ribs, your own body will be able to create a new equilibrium between your CSF production and absorption, and this will prevent overdrainage.  It's a race now. To find or create an 8-10 hour opening for your surgical team in the OR before the tension on your plates causes a breakdown exposing the existing bone grafts to infection. The frustration is that our only way to impact the outcome of this crucial race is for you to stay as flat in the hospital bed as many hours in the day as you can....without going stir crazy, loosing all your condition, or developing blood clots! Our greatest advantage in this race is our faith and your amazing good humor and optimism which are bouyed daily by your faithful friends and many loyal supporters. Together we will win this race, complete this harrowing chapter of your journey, and return to BrightWood where a future brimming with possibilities awaits. 

A surprisingly difficult way to win a race. But Toliver is in. Whatever it takes.  We will not fail.  

As the early morning sun light filters into your hospital room, I can't help but think you should be on your way to Kansas City today with the Same Sky cast to perform at the American Music Therapy Association's annual conference.  But that is not meant to be.  We are grateful every day for their friendship and the transformative impact APTB and the Same Sky cast have had on your journey and our family. We will cheer them on from John Hopkins  and take pride in knowing they are about to Rock the World with their courage, talents, and inspirational messages. Look out Kansas City!!!

Forrest's message to the Same Sky Cast:  "Toliver and I wish we could be there with you, but we know you will do a real good job. Safe travels and have Lots of Fun"!!!!

With hope, love, and faith,

Mum