Update: 9:00am on 4/29

It's been a long but productive week, Forrest. With just Austin and me here, we couldn't get to the blog earlier. So I apologize to your many faithful followers for the delay in posting. The storms have exhausted you and the medication adjustments are challenging. Your Team was running on fumes literally stumbling through the days. Then our prayers were answered and you reached out to us. On Wednesday, your trembling hand moved with clear deliberation to touch mine. At first, I was afraid I wanted it so badly that I must have dreamed it. In most of our lives, such a simple thing might have been overlooked, inconsequential. But for us, that human touch… the mutual connection between a mother and a son is monumental.

Even with all the days and nights, weeks, now months I have been at your side, I cannot really imagine how hard, how painful and frightening this has been for you. I watch you struggle to swallow, battle the tremors and push yourself to lift two fingers for your therapist. I can't let myself think about where you should be, at home with your friends, getting all excited about graduation, planning your summer and starting college.

Instead, I think about where you were last week and how far you have come in just the last few days. Each day now you regain a little more of your lost ground. Each day brings another miracle, another reason to celebrate your progress… Yesterday, I sat holding my breath when your therapist put a red marker in your hand and with a huge smile said, "let's play tic tac toe." She drew the hatch mark on the white board and held it up on the tray of your wheel chair. Never one to let a challenge go by, you pushed through a tremor and got that marker on the white board twice. Although your X's were a little shaky, you were determined and your strategy was sound. Next time you'll be strong enough to finish the game and might just beat her!

With love, faith and hope, Mum

Quote of the day: "If you can lift just one finger, you can change your world." Mum

Forrest in the tilt table

Forrest and some of his pictures

Holding up two fingers

Update: 11:00pm on 4/25

Forrest has had a mixed bag weekend and Monday.  He is having serious storming and tremors that look like a body wide charley horse that he has to agonize though for hours on end.  The good news is that he is being more cognitive every day.  He has changed even from the weekend when I was there.  On Saturday the best he could do was track with his eye and blink.  By today he can indicate on cards what he means and can pick up balls and is trying his best to fist bump.

So he is trying so hard to communicate with us and he is doing his best to survive the storming/tremors and come back to us.  It is obviously hard for him and he has lost a lot of weight over the last several weeks.  But for him to rally so quickly after his few days at Shepherd is impressive.  He is trying so hard and Shepherd is obviously a great place for him to be.

Austin is a superstar as Brian Selfe so aptly pointed out yesterday.  Mrs. Sharples pointed out that Forrest is indeed a Jedi and I can tell you he is the toughest guy I have ever met struggling thru this pain and issues.  I can tell you further that Forrest is made out of Awesome!   He is making progress every day.

The other star in this whole situation is Mom.  She hasn’t been home since this started.  She steadfastly has stayed by her boys and is there every day making sure everything that can be done for him is being done.  She is there with him night and day representing his situation to the Doctors, nurses and therapists.  She runs her business from wherever he is and she is his Florence Nightingale.  She is amazing and will never give up on her boys, the most amazing Mom I have ever met (excluding mine) and is also made out of Awesome.

So that is our update as of Monday night, like I say it is a mixed bag but much better that we were a week ago.  Team 44 is going strong and Forrest is doing his best to come back.

Dad and team 44

Update 9:15pm on 4/23

We are settling back into the fold at Shepherd Center. There is great comfort in the familiar faces and voices of doctors nurses and therapists who all played such a huge role in Forrest's first miraculous recovery.  Their love and devotion to Forrest is written all over their faces.  The night nurses all came to visit him last night, to offer their encouragement and support.

In spite of his weakness and storming, he began his therapy sessions yesterday.  The exciting news today was his first communication in weeks.  He was able to respond briefly to his speech therapist's questions by blinking once for yes and twice for no.  The effort was so great that he could only maintain this tenuous link for a few moments before a storm overtook him and his racing heart and tremors swept him away.  I ache to hear his voice.  The last time I did was March 27th when with great effort he whispered "thank you" to a nurse who changed his intravenous catheter.  The tremors are heartbreaking.  Sometimes moving his arms or legs helps, sometimes a wet cloth on his head, sometimes repositioning him breaks the cycle, sometimes extra medications grant him a reprieve.  And sometimes nothing seems to bring relief and we just have to ride them out. 

Our day was brightened by a visit from Brian Selfe, one of our incredibly poetic blogsters, and his son Tyler stopped by to deliver Andy's Devine homemade cookies and his mother's amazing chocolate Easter eggs. They arrived just in time to help us move Forrest and his belongings to his new room (his18th room since the accident).

Tomorrow is Easter, Forrest.  Rebirth, new beginnings, faith, daffodils & "peeps"... I will give thanks for my many blessings; your spirit is alive & you are fighting your way back to us, your brother's strength of character and uncompromising commitment, your Father's patience with me and devotion to his family, my brother's & sister's love & support (Granma Boo would be so proud of her 5 "Pebbles"), the amazing generosity of your extended family, our friends & colleagues, the talent & compassion of your many doctors, nurses, & therapists, my growing faith that you are meant to lead your own life, that you will reach out in your own time to your family, friends, and community. 

Tomorrow, I will celebrate the joy & love in our lives and I will pray for patience (not my strength) and the courage to embrace whatever the future brings.

With love to all of Team Forrest,
Mum

Update: 10:15pm on 4/21

Today has been filled with hope as well as tears. Forrest made the move by ambulance to the Shepherd Center and received an uplifting warm welcome. As news of his return spread, many of his previous nurses and therapists stopped by to see him. There were a few tearful moments as they expressed how sad they were to see the extent of his setback. But it was also inspiring to see how committed his team is to getting him back on his feet and talking again. His medications and nutrition are being adjusted and if he’s strong enough, he will participate in physical therapy, occupational therapy, and speech therapy tomorrow.

I’ve been watching an HBO mini-series called “The Pacific,” which follows several groups of WWII marines around the Pacific theater. One of the mortar-men, Eugene, goes from being a fresh recruit to being a seasoned veteran, showing new recruits the ropes during the intense island battles. Being back at Shepherd, watching other patients and their families, and reflecting on how far we’ve come, we have begun to feel like battle-hardened veterans. We now know how to dig our foxholes, but it hasn’t gotten any easier. All we can do is focus on gaining small amounts of land, day-by-day. Forrest made so much progress at Shepherd the first time, we know he can do it again. They have reassembled his original team and they are ready to fight for him. As one of them so poignantly stated, “This is where miracles happen, it’s what we do.” We’ve seen it before, we’ll keep working around the clock until Forrest makes it back again.

Love,

Austin and Team Forrest

Aunt Tricia standing guard at the end of the graveyard shift

The awesome transport team and Forrest arriving at Shepherd (yes, he's wearing "cool" shades)

Shepherd nurses psyched to see him again

Update: 11:30pm on 4/20

A rough day for Team Forrest. After further consideration the team at Johns Hopkins decided that Forrest’s storming needed to be under better control before he can be further evaluated for what lead to his regression in the first place. So no trip to Johns Hopkins tomorrow. A disappointment for the team 44 not to be going closer to home, but only for a moment. That’s all the time we could spare.

The place where Forrest made the most progress after his UVA experience was Shepherd Center. Hopefully we will move him there tomorrow and we all hope he will make the same sort of progress that he made before and we can get the storming under control. Dr. Kaelin and his team of doctors, nurses and therapists were magic for Forrest before and we are all hoping a repeat engagement that is even better. 

So the plan changes and it remains the same. Get Forrest better, we go forward one day at a time. He is trying so hard and he tells it to in very small ways, which is the only way he can right now. But he is in there and he is giving it everything he can to get back to us. 

So Hopkins or wherever he goes after he gets thru the storms and progresses will have to wait to for another day. First to Shepherd , then on to the rest.

Thanks for everyone’s support. 
Dad and Team Forrest

Update: 10:00pm on 4/19

Forrest had a PEG feeding tube put into his stomach today, allowing the nasal gastric tube to be removed from his nose... he looks relatively more comfortable. He's still minimally responsive and is having neurological "storming" episodes.

Mom, Dad, and I put together a case presentation of MRI & CT scan clips, diagnostic reports, and other information on Forrest's case. Dad went up to Johns Hopkins and presented it to Neurology docs there. They've accepted him and we may be moving him by air transport (medical jet) as early as this Thursday, depending on bed availability. We are looking forward to being closer to Home and our VA friends, but we will also miss the great and generous friends (as well as wonderful doctors nurses & therapists) in Atlanta. Hopefully he will be strong enough to someday make it back to rehab at Shepherd Center, where he made such great progress before. We will let you know when he's ready for brief visits from friends.

Love,
Austin and Team Forrest

Update: 4/16 at 12:30pm

Well Forrest, you and I had another good night. It is 8:00am and your Mom just walked in. You immediately focus on her as she leans in and tells you how much she loves you. I can see you processing that. You are focused on her. I can feel you coming back. You are taking your time. But you are headed back.

Let me tell you what your days have been like lately. Your Mom, and Austin and I rotate shifts with you so you are never alone. Your Mom is with you most of the day, then Austin comes in the afternoon and then I come in around 11pm and stay until morning when your mom comes in and the whole thing starts over again.

Your Mom stays with you most of the day. She relieves me about 8am.  She talks to doctors, chases down medical records, looks at other TBI research on the internet and is constantly in touch with your Dad.  She also does PT three times a day, even if PT comes to work with you and if they missed your appointment because you were having an MRI or other procedure. This is how your Mom does your PT with you.  First, she takes off your fancy sheep lined boots you wear during the day.  These boots keep your feet at right angles so your tendons and ligaments don't get too tight.  So she takes off her shoes and climbs onto the foot of the bed with you. Then she gently rubs your feet and calves and starts to slowly stretch your long, sinewy legs.  She holds your legs and maneuvers them into the range of motion so your leg muscles remember how to move and it stretches you out from lying in bed all day. She works on one leg at a time, and then she gets out of your bed. She goes to the side of your bed and leans over to stretch your arms, starting with the hands and fingers and wrists. Then she gently lifts your forearm up and rotates a little at elbow and all the time she is talking to; you come on Forrest, relax, lean your arm out, ok back in, that's good.  It is important for you to keep your range of motion in your arms, shoulders, and legs. Then she talks about the stories behind all the photos on the wall. She reads you the comments entries from your blog.  She also reads books to you. Currently, she is reading you "To Kill a Mockingbird". 

In the afternoon, Austin comes in so your Mom can run a few errands and get home to meet me for dinner. That is in an ideal world when there haven’t been any complications during the day. Last night, she did not leave until almost midnight, which is a 16 hour day.  I try to get her home for dinner so I know she will eat something.  Sometimes she gets to bed around 10pm, but usually it is later than that, then I head into relieve Austin.

Austin stays with you in late afternoon until about 11pm. He keeps up on nurses and technicians and makes sure you get the right meds at the right time, he makes posters of photos for you to look at, updates the blog, shows you videos that friends have sent you, tells you stories of your adventures together, and helps turn you in bed if the nurses are short staffed. He speaks for you. When doctors show up, he knows your case as it evolves every day, so well, that he can convey concerns and ask questions.  I am so proud of your brother for being so rock steady for you. He is an amazing big brother.

I come in and watch over you at night. I make sure nurses are on schedule and that you are getting your meds. There is wireless in the hospital so I can check emails and look up stuff on the internet, sometimes if you are really quiet and all is well, I will watch a movie on Netflix while you sleep. As I watch the movie, I see your head over the top of my screen, the lights from your monitors blink and all is quiet. You are peaceful and sleeping well and I am awake, ready to intervene if necessary.  We all constantly watch over you and document everything that you do, everything the nurses do, all the meds, all of your signs and symptoms, what you like and what you don’t, your reactions to procedures, lights, sounds, what the docs say when they come in and any other issues that come up. Let’s just say, there are a lot of notebooks we have filled up in an effort to track your progress and your declines. Your mom writes letters to you and when you are ready, you can read them yourself.

During all this, nurses and technicians come and go, day and night. Every two hours your get turned in bed so you don't get bed sores and it also helps you avoid pneumonia. If the nurses are running behind schedule and there are two of us, we will do it ourselves. Then every 4 hours they take your temperature and every 6 hours they stick your finger to check your blood sugar. Almost every four hours you get some medicine or just water that goes into your feeding tube. This is called a NG tube (Nasogastric) and goes in your nose, down your esophagus, into your stomach and ends just inside your small intestine. This is how you get your nourishment for now and some of your medicines.  Soon when your fungus clears up, the surgeons will insert a PEG (Percutaneous endoscopic gastrostomy) into your stomach and that is how you will continue your nourishment. This will allow them to pull the NG tube so the Speech Therapist can start working with you on how to swallow. Then you can learn how to eat and drink again and of course talk. We can’t wait to hear your voice and your laugh again. So you can see that to get that to that point a lot of other things need to happen first and each one of those takes time. You have been through this all before and so have we. Now we just keep looking down the field for more hurdles and jump those, sometimes daily, sometimes every hour.

But we keep going.  We see you at the end of all this craziness.  We see you at the farm, with your friends and family, I see you on a horse, galloping up a hill with Rae and Kent and Austin, laughing all the way.  I see you shoveling snow with Sundance.  I see you watching an old movie in your man cave (basement).  I see you sitting around the dinner table laughing at something Austin said.  I see you playing Lacrosse, running down the long grassy field. So we keep seeing you Forrest and we keep telling you that we see you.  And soon it will not be a dream, but a reality.

Last night a night nurse told me about the amazing recovery of young women that had an aneurysm rupture and right sided massive cerebral bleed.  She spoke at a conference the nurse attended. She speaks of hope and what she overcame. She is now at college earning a Master’s Degree in Vocational Rehabilitation. So we pasted her link below for others that follow your blog to see another success story. She got over the hurdles Forrest and you will too.

Love,
Aunt Tricia and Team Forrest

http://aneugal.wordpress.com/the-injury/

Aunt Tricia reassures Forrest during on of his "storms." "Sometimes a tender, reassuring touch is the most powerful medicine." - Forrest's Mum