Tuesday, February 26, 2013

There is No Place Like Home!

Forrest and Team have settled back in at BrightWood and have barely skipped a beat.  We have jumped right back into filling Forrest's days with school, therapies and activities to help him regain his strength and endurance (very important after a week in the hospital!!!).  The graft site on his leg, the PICC line in his arm and the turban-like bandage on his head occasionally cause little hiccups in the daily routine, but overall, Forrest maintains his "bring it on" attitude and amazes us every minute with his resilience and ability to bounce back so quickly after a tumultuous week in the hospital.  His spirits remain high, his smiles are quick to appear and his eyes sparkle with life. 

Here is a link to a video of Forrest playing fetch with Super Therapy dog, Sundance:
http://www.youtube.com/watch?v=jJ1He4Exc5Y   Sundance was SO excited to have his boy home!

Below:  Forrest standing tall with Pops to feed the fish in the tank Austin created for Forrest!

Sunday, February 24, 2013

The Great Escape!

The PICC line cleared this morning and Miraculously all of the stars aligned! Forrest is blazing westward in his Team 44 Van ... destination Brightwood! With overflowing gratitude to our faithful prayer warriors, Pops for his round the clock patience encouragement and love, Tami's logistical wizardry, love & unfailing good humor, Judy and her amazing nurses from the Medical Team who helped get Forrest safely through this harrowing week, the expertise & compassion of the Extraordinary Neurosurgical, Plastics & Nursing team from Washington Hospital Center, the unconditional love of family and friends near & far (especially Austin who sent his special force to us almost hourly!) and most of all the spirit and determination of a beloved son and brother. And now we will raise our eyes to the horizon, breathe deeply, smile broadly and leap together over whatever hurdles lie ahead. Kick on, Forrest! Mum

Complications tonight

Oh Darlin' we are trying so hard to get you home. But tonight your PICC, or central intravenous line placed with great difficulty today, has clotted. You are understandably frustrated and blue over all the poking and prodding. Your skin graft site is on fire and you seem to hurt everywhere. For the first time tonight I heard your voice all the way down the hall from the nurses station! Welcome relief came with a visit from Mikk and FT with Gio & Shayna. I hope your wonderful friends know they are truly your lifeline. They recharge your spirit and brighten our days.

One of your great PAs came to visit with us yesterday. He's been one of your champions here for almost two years. He told us how in the beginning they really didn't have much hope for your recovery. But that now your amazing progress, your spirit and determination, in spite of all your setbacks, inspire their neurosurgical team! Later he told us, "all Forrest needs is a break. Please just let him have a break and the sky's the limit". We are praying again tonight, that you will get that break, your PICC line will respond to treatment, so that we can take you home, your grafts will take, your incisions will heal and we will celebrate your recovery with a victory dance at BrightWood. With love and faith, Mum

Thursday, February 21, 2013

Post-op progress

We are almost 48 hours post- op now, Forrest. We have all taken a deep breath and gathered our second wind. The first 24 hours were rough, even with frequent pain meds. But today you are brighter and stronger. You even stood up bedside for a few moments, though your heart started racing and your PTs had to quickly sit you down again. We are still waiting on the final culture results and hoping to take you home this week-end.

Your surgeon changed your elaborate bandage today and replaced it with an even more stylish head dress. He was pleased that the complicated flaps on your scalp he masterminded look healthy and likely to survive. You are going to sport an interesting profile for awhile until these flaps "settle in" and you will need further surgery to even the area out. But you never were one to worry about blending into a crowd and you are known for wearing crazy hats as well!

The tedium of a hospital stay has been brightened by virtual visits from your Bro and many of your friends. And today, a real life surprise visit from Mrs Sharples, one of the empowering life changing teachers you have been blessed with. She has known and loved you since kindergarten. The delight on your face when she walked into your tiny room was pure magic! And I do believe she was equally delighted to hear your voice for the first time since your injury!

I don't think we had allowed ourselves to admit just how terrified we were that your third prostheses was at risk. Now that the recurrent infections appear to be centered on the devitalized scar tissue and not deeper tissues, the relief washes over us like a warm summer rain.

As you continue to remind us, Forrest, "Everything is Possible".

With love and Gratitude for our many blessings, Mum

Tuesday, February 19, 2013

Surgery Update

6:00 PM

Forrest is currently recovering from the anesthesia and surgery he had today for the skin breakdown on his scalp and temple.  The reason this breakdown was happening is the repeated surgeries that he had in those areas and the thinning and stretching of the scar tissue.  The concern we had going in was whether this could be a repeat of the cranioplasty infection he struggled with October of 2011 that set him back so badly.  It had some similarities that had us very worried.
We just had the Neurosurgeon come out and tell us that it looks like there is no involvement of the brain or the titanium cranial implant, so we are very relieved with that news!  The plastic surgeon, whose job was to fix the compromised skin, was able to use a combination of a skin flap and a skin graft (from his thigh) to mobilize enough healthy skin to replace the removed tissue areas adequately. There will be more surgeries on the scalp later to get Forrest the cosmetic effect he will be happy with, but for now we just need healthy skin on the area. We will be here at Washington Hospital Center until the cultures come back, indicating whether or not there is an infection we need to treat and also to make sure all the skin is looking good - then we will go home.  Hopefully we will be home on the weekend.
So, we are still on track and this does look more like a speed bump than a derailment.  We are much relieved and appreciate all your prayers and encouragement.  Forrest is right, he does have a lot to accomplish and thanks for all your help to keep him going.
Mum and a sleepy post-op Forrest showing us that all is "ok".  Check out the rockin' turban!

Faith & Friends. Prayer & Laughter.

Oh Forrest, you have shown such courage and character throughout the triumphs and tragedies of this journey. I can't begin to comprehend how or why we are here again. But once here, the delays are so difficult. We had hoped to tackle the surgery Monday, to quickly repair the breakdown in your scalp incision before infection spread further. But we must wait until the team is assembled and the right plastics and neurosurgeons are available to make sure they are able to handle whatever needs to be done. Our hope and prayer is that when you go to surgery Tuesday afternoon the surgeons will find the infection has not involved the prosthetic. If it is not affected, they can remove just the devitalized skin and cover the defect with flaps of healthy scalp or skin grafts. And we could be home again this week-end, Your father and I hold hands and through our fear pray that God will shine his light on you through the coming hours, days and months. That your third prosthetic will be spared and your recovery will be swift and uncomplicated.

The waiting, the unknowable, the fear of you slipping away from us in spite of all you have overcome is terrifying. And yet you continue to inspire and charm all of us, including your doctors and nurses. Many of these generous souls spent months taking care of you when you could barely wiggle your toes or lift your head. They thrill now at your smile, your voice, your proffered handshake. They stop by to see you, to speak of miracles, and God's love, and to ask about your wonderful brother. We are grateful for their care and encouragement and for the focus on how far you have come.

We spent Monday in endless consultations while your brother and pals encircle you with their love and faith. With Tami facilitating, they cheer you with an avalanche of texts, phone calls and Skypes. Nick has you making funny faces, laughing about your childhood escapades, and plotting how he is going to break you out of the hospital and run off to join Austin in Hawaii.

You are blessed with amazing friends Forrest. We are grateful for the joy and laughter they bring to you and your team. And you will get through this, we will get back on your amazing trajectory, taking you all the way to Hawaii and beyond! You said it yourself when asked if you were tired and ready to go back to bed. You looked out the hospital window and said, "I have a lot of important stuff to do." You will heal Forrest, and have fun doing all that important stuff!

With hope, faith, and love, Mum

Sunday, February 17, 2013

Admitted to WHC

I am so sorry to tell you all that Forrest has developed another problem with his incision scar.  It appears that the skin is so fragile after many surgeries that it is breaking down again. Instead of charging back into PT we are in route now to Washington hospital center DC. Forrest will have blood work and a CAT scan tonight and possibly surgery again tomorrow.  He is strong as an ox now and we have caught it early. Our hope is to take care of this quickly before it has a chance to affect his titanium implant. He will have his phone and iPad with him, so feel free to send him your positive energy & encouragement. We'll update tomorrow as we have a better idea of where we stand. With love, Forrest's Mum

Monday, February 11, 2013

Picture of the Day

Forrest checking his heart rate after walking 2180 feet this morning on Sheltering Arms' Zero Gravity treadmill. With the exception of last Wednesday, that's 20 times further than he's walked in almost 2 years!

Quote of the day: "Nothing can stop me now." FS Allen

Thursday, February 7, 2013

First Week at Sheltering Arms

As I sit by your bedside watching you sleeping peacefully, I am so grateful for your life, your unique sparkle, your youthful resiliency, and your undaunted spirit. You have attacked every task put before you with grace and determination and continue to make friends and followers with your quick smile and characteristic thumbs up approach to every hurdle. When your new speech therapist asked you what YOUR goals were you quickly responded, "I want to practice speaking and work on my wit and knowledge"! We all laughed because we know and love your wit!

To be honest Forrest, after the first rough day of your nausea, fighting to keep you from sliding down in a heap on this rental hospital bed, managing your 6'3" frame in this tiny bathroom, your glazed expression at unholy hour you had to face the day...I fell into bed thinking why in the world did we leave the comfort and familiarity of home? But you reminded my why over the next two days, as you greeted each new therapist with a smile, walked 865 FEET on their Zero Gravity treadmill, worked your shoulders until they trembled with the effort, and bravely said "more" each time your therapists asked if you needed a break.

And yes, you get terribly frustrated. Your growl will stop us in our tracks. But now more often than not, you will follow that primal sound of displeasure with a quiet, "I got it." Or "wait a minute". You are working so hard to share your own thoughts, feelings, and opinions on just how things should be done! Sometimes it's a gargantuan task to find the word you're searching for. Sometimes the wrong word comes out, but you are finding increasingly complex and subtle ways to express yourself. And after so long waiting and praying for you to find your voice, we cherish each message you have to tell us.

As the sun comes up today we are eagerly packing to return to BrightWood, for the week-end. We will miss our new friends here, but have lots of homework assignments to complete before you charge back into the program again on Monday.

With your bring it on attitude, the Medical Teams diligent nursing care, and Tami to keep us all organized AND laughing, we CAN do this . And you WILL rebuild your life and future, one day at a time. With love & gratitude, Mum

Check out the pictures below and the following YouTube link for a video of PT from Sheltering Arms:  http://youtu.be/9iO4Af9y-qU

Tuesday, February 5, 2013

Forrest Tackles Outpatient Therapy

Hey Forrest it's your very grateful, if slightly frazzled, Mum. With Del's blessing and extraordinary support from Tami & the nursing staff from the Medical Team, you have launched into a new chapter of your recovery. Yesterday, You began an intensive outpatient regime at the Sheltering Arms rehab facility in Richmond, VA. Our plan is that for the next four weeks you will participate in 4 1/2 hours of therapy daily Monday through Wednesday and, if the roads are safe, we will travel back to BrightWood on Thursdays. This will allow you to enjoy some time at home and continue with your schoolwork with Sharon, music therapy with Tom, and PT work with Del Thursday through Sunday. It's a fairly aggressive schedule, but recovery is not for the faint of heart. And you, Forrest, have the heart of a lion! In spite of several episodes of nausea yesterday you insisted on finishing all four of your sessions. And were back at it early again this morning. We are hopeful that the Diagnostic technology and therapeutic options here will help find some solutions to your chronic medical Challenges. Thankfully, you have classmates here who have already begun to visit you and friends who continue to reach out to you through messages, Skype, and FaceTime. Your friends keep you motivated and help you maintain your characteristic good humor through the long hard days. Off to therapy again now. More later, Mum.