Saturday, October 31, 2015

By God's Grace

Sitting by your bed in the early morning hours watching you sleep with Toliver and Sarah Bear standing guard, I am humbled once again by the depth of your courage and the breadth of your resiliency. 


Yesterday was a difficult day.  The new programable valve, which is supposed to lessen the danger of your cerebral spinal fluid overdraining, is proving difficult to reprogram.  The process involves placing a powerful magnet over the valve which is directly under your surgical site and pushing the magnet against your tender chest, while turning the magnet and reading the instrument. 

The setting refused to budge.  When it finally did, apparently it went in the wrong direction, lowering the resistance to flow instead of increasing it.  As the day progressed the profile of your treasured Noggin began to worsen instead of improve.  Neurosurgery was paged, but Friday night is a crazy difficult time in any major urban hospital. The neurosurgeons were all tied up in the OR.  It was surreal.  We talked and laughed and played cards.  All the while I knew your situation was worsening and I was pretending that everything was fine.  But you are too observant and we are too closely connected for me to fool you.  You called me out, laying a hand on my shoulder and looking right into my eyes, you asked me, "are you OK Mum?"   I answered honestly, telling you I was worried about you're Noggin and just wanted it to be all better. You grinned at me and replied, "of course Mum, it's going to be just fine and now I'm going to crush you at blackjack!" And so we played on and you did.  

Eventually the chief neurosurgery resident appeared and agreed that your changing scalp profile meant that there was a problem with the shunt or the valve. He left to call Dr. Luciano and get supplies.  He had to deal with another emergency before returning with a different programer. This reader confirmed that the setting had gone in the wrong direction.  It was now at four instead of the desired seven. More pushing, turning and probing the surgical site over the valve with the magnet.  You couldn't help but squirm but never complained.  Eventually the setting budged and moved to six but wouldn't go to the goal of seven.  The skin surrounding the surgical incision was becoming red and swollen.   The resident was clearly frustrated and concerned.  He paused to consult by phone with Dr. Luciano. The decision was to take what we could get and hope that we would see some improvement overnight.  He promised to call the manufacturer of the valve to see if there are other ways to advance the setting.  

You gave the weary resident a smile, a thumbs up and thanked him for trying, as he responded to another page from the ER.  I asked for some ice packs for the area and more Tylenol which seem to relieve the pain and some of the redness.  My heart went out to you, with your valiant patience.  And to the dedicated resident who did his best for you.  He clearly empathized with your discomfort and my concern, while probably juggling another dozen difficult cases in his mind. 

And by the grace of God, this morning the light filters through the blinds and glances across your sleeping form revealing answered prayers.  The valve is working.  Your profile is less sunken.  A hint of a smile graces your sleeping face.  

As I sit quietly writing this entry, the door to your hospital room opens and, as a nurse joked later, "All heaven broke loose"!  In comes last night's resident with a big smile on his face.  Your eyes fly open and he announces, "The Stars have aligned and I am not leaving the hospital until the problem is fixed".  And with him he has other neurosurgery residents and the valve manufacturer's representative!   Together they reassess the situation and your appearance.   While your scalp is less sunken, you and the resident agree it's not yet "perfect"!  The group proceeds to probe the delicate area again and discover that the valve is somewhat tilted due your anatomy (or perhaps an old fractured collarbone?). With this revelation they tilt the magnet ever so slightly and are able to successfully reset the valve to the desired level seven!   

Radiology is called and the technicians arrive right away.  They recognize you and Toliver from your many visits to their department.  They are thrilled to be able to help confirm radiographically that the shunt and valve settings are correct! 

What a roller coaster ride the last 24 hours have been.  From despair and worry through a hurricane of activity culminating in another victory and more  Angels to add to your amazing Team 44!

We are truly blessed to have such a Cadre of dedicated surgeons, doctors, nurses, radiology technicians and medical technology representatives all gathering, like earthly Angels, on a Saturday morning to get you back on course! 

We won't really know if the valve will continue to prevent the overdrainage of CSF until you are allowed to climb out of this hospital bed and resume your activities, your life.  But for now, for this moment in time, the imminent danger is past.  We can breathe deeply again and look forward together to the next challenge.  

With a tired but grateful heart,

Thursday, October 29, 2015

Hanging in There

Many heartfelt thanks to all our prayer warriors, beautiful messages, funny video messages, encouraging texts and positive healing energy. Your love and support must be working. Overall Forrest had a good first day after surgery.  We have certainly had a whole lot worse! The pain isn't too bad compared to earlier surgeries. Forrest is declining oxycodone in preference of Tylenol.  He still isn't allowed out of bed so that's a little frustrating for him and worrisome for Toliver.  The new valve hasn't yet started working it's magic.  But the tension around the plates and bone graft is no worse and the fragile looking skin is still intact. So we're kind of in a holding pattern until we see the neurosurgeons again tomorrow morning. Perhaps an adjustment in the valve tomorrow will move things along.  

The highlight of the day was visiting with Austin then Gio and Shayna on Skype and Face Time with A Place To Be friends including Daniel and Ben. 

Forrest brightens up most any day with his characteristic wit. This evening a nervous bevy of nursing students, all about Forrest's age, came bustling into the room just as Forrest began his dinner.  He looked up from his dinner at the group, smiled his crooked smile exclaiming, "If I'd known you were all coming, I would've ordered more food!" And I am sure he would have! 

Until tomorrow, sweet dreams Champ.     

Wednesday, October 28, 2015

Post-Op Update from Toliver

Hello everyone, this is Toliver.  My person, Forrest had surgery today at Johns Hopkins Hospital.  I really don't like hospitals, but the doctors and nurses are really nice here.  Before surgery, I got to hang out with Forrest in pre-op.  The nurses were all quite smitten with me and I was allowed to give them kisses.  Mum says it was very labradorable.  I was worried when they took Forrest away, but everyone kept reminding me that he is strong and that he will be ok.  I overheard the doctor talking to Mum, Pops and Tami earlier and Dr. Luciano said he is optimistic about how the surgery went to put in the new programmable valve in Forrest's shunt.  They want to take things slow and make gradual adjustments to find what helps Forrest the most.  He might not be able to sit or stand for a day or two to give the new valve a chance to do its job.  Hopefully in a couple of days he will be back to playing with me again.  In the meantime, I will quietly watch over him and help to bring smiles to the faces of the doctors, nurses, other patients and Team 44.  We don't know how long we will be here yet, but we will keep you posted on how my Champion is doing over the next few days.

Thank you all for the love you give to my Forrest.
- Toliver

 Hands in!  "Team 44" on 4!!!  I'm proud to be part of Team 44!

Sunday, October 25, 2015

A Hard Lesson to Learn

Well Darlin' Forrest, you have made great use of the healthy months since your last surgery in July.  You have worked so hard at your recovery; gaining physical strength, improving your memory, fine tuning your legendary wit, attending college class, performing in the Same Sky Project, fundraising for CCI and APTB, and embracing yoga and meditation.   We had hoped that Dr Kumar would get his wish for you...a whole year without any surgery.  Unfortunately that is not to be, but all your hard work has you "optimized", as Dr Kumar says, for what lies ahead.

For the past few weeks, we knew trouble was lurking in the changing shape of your noggin. The bone grafts so carefully constructed by Dr Kumar in March were becoming more prominent and sharp edged.  The titanium plates that used to be visible only on CT scans, were clearly discernible through the increasingly taunt  skin graft. Appointments with Hopkins' hydrocephaly specialist, Dr Luciano, were moved up and Dr Kumar received weekly photographs of your changing profile, hoping to delay surgical intervention, at least until December.  On Friday we traveled to Hopkins again.  Our return was brightened by warm welcoming smiles from Erica and Melody, staff who have come to know you and enjoy your and Toliver's visits.  Dr Kumar's smile was more restrained, worry clearly visible on his face.  He affirmed our growing concern that, without intervention, the progressing tension was likely to result in an imminent breakdown of the skin overlying your bone grafts, exposing the bone again to infection and calamity.  We can't let this happen. Pre-op labs were drawn and Kumar consulted with Dr Luciano. They agreed that your shunt, which should protect you from high CSF pressures, now appears to be over draining your CSF, collapsing the skin around your reconstructed skull. This over drainage is exacerbated by gravity.  And when you are upright standing tall and strong as you've worked so hard to be, the shunt responds by draining too much CSF from your amazingly resilient brain!   What a paradox!   The doctors agree, this can't wait any longer.   

The plan now is to tackle the problem in two stages. The first step is to improve your shunt performance.  Next Wednesday, Dr Luciano will surgically place a new programmable valve in the shunt line at the level of your chest. Hopefully this new valve will stop the over drainage of CSF and resolve the problem so you can get back on track.  We expect to be at Hopkins several days after the surgery until they are happy with the settings and your new equilibrium. Our vision and prayer is:  Your skin stays intact until surgery, all goes well at Hopkins next week, the new valve allows your CSF to stabilize taking the tension off of your grafts, you regain your amazing trajectory, and you travel safely to Kansas City next month to perform the Same Sky project with your APTB cast at the American Music Therapy Association conference!  That's our vision and prayer for you.  

The second step, after the CSF issue is resolved, involves a bigger surgery scheduled on December 4 to complete the reconstruction of your skull in time to heal for Christmas!    You are strong, resilient, optimistic, funny, loved, and blessed in so many ways.  We've worked hard to get you out of bed and moving (over 10,000 steps on your own in one day recently, according to your fit bit!) Now the challenge is for you to stay down, feet up and resting until Wednesday!  Why does that seem so hard?  Because you have become a man of action, moving always toward the next challenge, the next opportunity. And to be fair, you are genetically challenged when it comes to the patience department. So we will practice patience until we learn this lesson together;   to center ourselves, to breathe, rest, and find our inner calm....while we envision your future....healed, joyful, and moving confidently again toward the next horizon. 

Practicing Chillin' - something you used to be really good at before the hard work of recovery began... 

With love and gratitude for our loyal friends, devoted family, unshakable prayer warriors, and brilliant caring doctors. 

Sunday, October 18, 2015

Our family together again!

With Austin and Martin (now 6months old!) home from Duke for fall break we crammed as much living as we could into this fabulous family week together!  

The Fall Races At Glenwood Park is such a terrific venue to spend time with family and catch up with lots of friends. 

Corina and Forrest. Just like the good old days.... But wait THESE are the good old days! 

Sunday we visited a friend recovering from a TBI at Walter Reed Hospital. These visits meant so much to us when our family spent long months in the hospital with Forrest and it was good to be able to pay this gift forward. 

Monday, Austin with Martin and Forrest with Toliver spoke about canine communication to Mr. Lyman's incredibly bright and engaging fourth grade class at Hill School.  I was such a proud Mama Bear listening to Austin and Forrest share their perspective on the impact Canine Companions for Independence has had on their lives as well as their love for, and communication with their CCI dogs. 

The first time we visited Hill School after your accident you were unable to talk, Forrest. But the teachers and staff took turns sitting by your side and recounting their memories of your years at Hill with you. That day they shared their unshakable faith in you as well. So this time, listening as you chatted up a storm with Hill teachers and staff after your presentation was especially poignant, as the Hill community has played such a huge role in your recovery.

Wednesday, Forrest loaned his horse Riley to Austin so we could share a day of hunting over the glorious Virginia countryside once again.  

Thursday, Forrest, Austin and I joined our QGM crew for our annual International Coastal Cleanup Project. Our group picked up 50# of trash, including 107 plastic bottles, from  the banks of the Potomac River. Last year Forrest,  you had to stay on the main trail.  This year, with Austin and JP's help, you scrambled down the banks and made your way along the rocky shoreline!

Friday, Austin & I got to join the audience at Harper Park middle school for the Same Sky Project performance. It was stunning to watch how much you and the rest of the cast have progressed! The students were blown away! 

Saturday, Gio brought his and Shayna's new adorable CCI puppy, Yaeger, to meet his CCI cousins, Toliver and Martin! It was puppy Mayham playtime followed by a breather for photos. 

After a terrific hunt breakfast at the Davises (where somehow we failed to take a single picture), Saturday night you and Austin are "dressed to the nines" for the Windy Hill 70s themed gala at Salamander resort.  Of course you ended up dancing on stage with the Rock On Band. It must have been great PT because you topped 10,000 steps on your fit bit Saturday!!!

Sunday, This afternoon we had to say goodbye to Austin and Martin as they head back to their masters studies at Duke.  

We miss you both something terrible.     Austin, You brighten up our days and replenish our souls, as only family can. 

Safe travels. Counting the days until Thanksgiving and you both return to BrightWood.  Love Love Love you,

Mom Dad Forrest and Toliver too! 

Sunday, October 4, 2015

Overcome with Gratitude

We've been blessed in so many ways along your journey Forrest.  This week-end we had amazing opportunities to give back to the two non profit organizations who have helped you the most. 

On Friday after speaking in two Same Sky performances at Saunders middle school on the far side of Manassas, you rallied and spoke again at the CalKaine Cares formal fundraiser benefiting CCI at Salamander Resort. It was terrific to be there with other CCI friends including beautiful  Caroline her charming CCI companion, Shelley!    

Your talk about the many ways that Toliver has enriched your life and supports your recovery gained a standing ovation.  

We all kind of got carried away with the evening as you began to bid on the first live auction item, an hour training session for four with Pierre Garcon, wide receiver for the Redskins.  As the bidding topped $3000 you looked to your Dad and questioned, "what should I do?"  His reply, "Go For It!  And you did...placing the winning bid at $3800.  Ouch!! 

On our way out the door the organizers approached you and said how much they appreciated your speech and to not worry about checking out that they were going to underwrite your hour with Pierre Garcon!!!  What a terrific gift!!!

And Friday night was just a warm-up for our own Saturday night fundraiser for the Forrest Stone Allen Financial Aid Fund at A Place To Be in conjunction with the 2015 public premiere of Same Sky! The weather forecast was so dismal our event was moved from BrightWood to Hill School. No problem.  All hands on deck.  Let's relocate this event and we did!    With the help of many incredibly generous volunteers, including eight of your faithful life long friends, last night we raised $62,000 to help children and adults who might not otherwise be able to afford music therapy!  

Tom, Kim and all the staff, mentors, and fellow clients At a Place to Be have given so much of themselves to help you and your recovery. There's no doubt in my mind you would not be where you are today without their talent, devotion, compassion, encouragement and friendship.  Throughout your journey A Place To Be has taught us that sometimes the best way to heal ourselves is to lend a hand to someone else.  

You and fellow Same Sky cast member, Megan, celebrate in the lobby of the Hill School theater, under a sky full of clouds.  Each cloud representing the name of a donor to the FSA fund.  It was truly a breath taking moment to emerge from the theater and see this beautiful visual testimony of our community's generosity.  We are truly blessed!  

Good night Champ. You and your pal Toliver done good. Sweet dreams. 

With Love & Gratitude,
Team Forrest