Thursday, March 31, 2011
Due to the risk involved of multiple surgeries on his already compromised condition, the doctors don't want to go to surgery as long as he is making even the slightest progress each day. The plan now is to maintain him in neurosurgical ICU at Emory University Hospital, under heavy sedation and on the ventilator, in order to let his brain heal and his condition stabilize. He is connected to a room full of monitors and life support equipment and we have a little alcove connected to his room where at least one of us is always present. Each day they will lighten the sedation enough to evaluate his neurological status and his level of awareness. When he shows signs of waking up and is strong enough to breathe on his own, they will begin to wean him off of the ventilator. If at any point his condition starts to deteriorate again, Emory has the ability to rally the surgical team to take him into surgery quickly. We are hoping and praying that won't be necessary.
We are so grateful for the gift of your collective prayer and positive visioning. Coupled with Forrest's indomitable spirit and the best medical and nursing care we can provide, we will navigate this detour and get him back on course. He has worked so hard and cleared so many seemingly impossible obstacles with grace and dignity beyond his years. He found his way back to us from his first coma. With the love and support of an ever enlarging community of family and friends, he will do it again. And we will do whatever it takes… for as long as it takes to bring him home.
Mum and Team Forrest
Quote of the day: "Once you choose hope, anything is possible." Christopher Reeves
Wednesday, March 30, 2011
A special thanks to all of Forrest’s friends who have written notes of encouragement on the blog… keep them coming!
Forrest has continued to have troubles over the weekend and has become much weaker. After he endured many tests, including a spinal tap last night, it was agreed upon by the docs at Piedmont and the family that we needed “a fresh set of eyes on this complicated case”. We moved Forrest yesterday afternoon by ambulance from Piedmont Hospital to Emory University Hospital.
We immediately had a team of neurosurgeons, neurologists, and neurointensivists all in the room with Forrest. They examined Forrest and reviewed all the images and agreed upon the best approach. They sedated him and drilled a hole in the top of the resin skull and drained a large pocket of fluid from in front of the brain. He will remain in neurointensive care while they continue to monitor him. The CT scan taken immediately after removal of the fluid was encouraging. Now we will have to wait and see if this stops the pain and tremors.
It's been heartbreaking watching Forrest decline so fast these last days , but Rae & Kent feel that we are finally in the right place. We will update you as we know more… but that may take a few days. Also…no cell reception in Emory….no phone, text or email on our phones…so bear with us if you don’t hear from us as often.
We’ve had a saying in our family… started by our mother when we were children, “Sisters, sisters”…which morphed into “Who’s gonna love you like your sister?” Rae and I have said this to each other for years and years…. usually followed by giggles and laughter. I have to admit, in these last weeks, sometimes followed by tears. We have all, in our extended family… Stones and Allens, found an even closer bond than we knew we had. I referred to Aunt Lynn ( Kent’s sister) today as my sister-in-law once removed. She loved it…and we’ve coined a new term!
Forrest has lots of guardian angels watching over him…friends and family. Good night, sweet Forrest…your brother Austin is watching over you in person… but all of us are watching over you in spirit.
Love, Aunt Lobie and Team 44
|Forrest gets a ride to a new location.|
|Always supported by a rotating cast of "Team Forrest"|
Monday, March 28, 2011
Now, what can you do? Again, the continued messages of hope and prayers are key. But I have a special message for Forrest's high school friends right now. He CAN hear us and is aware of what is happening. He isn't able to respond as much to us right now except for a few thumbs up and hand squeezes, so we need for high school friends to send messages of hope and good cheer to encourage him by one or more of the following ways: post a message on the blog (we read these to him), post a message on the Friends of Forrest Facebook page (again, we read it to him), or contribute to the VoiceThread (where he can hear your voice) that Aunt Lynn is making for him. To participate, email a picture of yourself (preferably with Forrest at some memorable time) to me (firstname.lastname@example.org). I will send you back the directions for the next step. High school friends, he especially needs to hear from your right now so please do one, two, or all three of the methods above to connect with him!!
We look forward to summer, being back on the farm, reuniting with family and friends and building new memories. We will tell stories of how everyone joined together to make down a long and winding path back home. But we will make it. And we are looking ahead to that goal. There is such power and strength in love and that is holding us all together now. Thank you friends and family.
It has been my honor to be here by your side, Forrest. You and your family are an inspiration to me. I am leaving today, but my prayers continue always.... Aunt Lynn
|Mum reassuring Forrest between tests... telling him tales of diving adventures yet to come.|
Saturday, March 26, 2011
I hate to be the one to tell you all that Forrest has had a setback that has put him back in the hospital. We had noticed an increase in microtremors (small involuntary movements of the hands and legs) which the last few days have been worsening. Yesterday, he began complaining of pain in his head and the pain was so bad, it was hard to comfort him. As many of you who have followed this blog know, he is a real trooper and never complains about a variety of painful medical procedures. So we knew things were changing for the worse.
We spent most of yesterday trying to get a MRI on a boy that couldn’t hold himself still no matter how hard he tried. In the last 24 hours he has had a battery of tests including a CAT SCAN, contrast MRI and EEG (to measure brain waves). The tremors progressed into seizures last night. He was moved to neuro ICU and started on anti-convulsants.
The most likely problems are fluid accumulation with pressure on the frontal lobes of the brain and seizures from the swelling or the original trauma. We hope and pray he can be managed medically and in a few days will start to improve. The other option is to surgically place a drain in the ventricle in his brain and relieve the pressure that way. This has several potential complicated side effects and assumes the pressure in the front won’t worsen and push the brain backwards. So currently it is a watch, wait and pray situation. The nurses have been great and helpful as well as the Doctors. We have reinstituted all night watches by Team Forrest, with Austin pulling the graveyard shift, so the emotional and physical demands are pressing on all parties. We are grateful for Aunt Lynn's support at all levels and Rae's sisters are scheduled to pick up the baton when she has to return to Colorado.
We are praying that this will turn out to be just another (although big) bump in road and not a major derailment. We are keeping bedside vigil again, watching monitors, tracking numbers and doing our best to will Forrest peaceful dreams of home and friends. The Doctors will continue to assess him neurologically and have warned us that if he doesn't make substantive improvements in the next 24 -36 hours, that could indicate the problem is worsening and we may have to choose one of the more aggressive treatment options.
We have become great believers in the power of collective prayer and the faith and love of all his extended Team Forrest. So we are hoping you will send your prayers and good thoughts his way again. Just when we thought we had cleared the major medical hurdles and this was mostly time and learning, we round the bend in the road and are facing another huge fence we must clear.
It reminds me of the time that Austin was leading the field with Forrest and myself right behind him. We went charging off through a boggy field and jumped a rail fence up into the woods and galloped our horses up this great big hill, weaving through the trees. My old hunt horse Clark Kent was about done in as we approached the top of the seemingly endless hill. Then I saw that at the crest of the hill was a huge stone wall uphill into a open field. I urged Clark on for all he was worth and the three of us made it over that wall, Clark just barely. We then looked back and laughed. Everyone else had looked at where we going and decided there has to be an easier way. They were undoubtedly right. But sometimes you have to go the hard way together and jump that last big fence whether you want to or not. Evidently Forrest has more big fences to jump. We just have to kick on and make sure he knows we are all there riding with him.
Quote of the day: "Look to the light. Never look down the dark path. Always look to the light and keep your focus on the future you envision." Forrest's Uncle John Stone
Thursday, March 24, 2011
Forrest has made the move to Pathways the outpatient facility. He is now on a different schedule and basically everything has changed. His routine is now waking up in the morning later and getting dressed and eating breakfast. Then he is going to the car for the ½ hour ride to Shepherd Pathways. We have been staying with him for lunch after he does his first hour of orientation. He takes his lunch which we make up for him. He then continues on for another 4 hours after lunch in various types of therapy. We then pick him up and bring him back to the residence apartments at Shepherd. He is generally tired and needs a nap. We try to get a snack in him beforehand (he has lost 40 lbs) and then give him a nap and then wake him up for some activity. Last night it was lacrosse in the park, with mini-sticks and short distances. Tonight it was a friend from Hill School, Montana who came to visit him as she was traveling in the area.
After that it is back to eating dinner and some entertainment, reading or TV or a game. Then a shower and dressed for bed. Night meds and bed are next. Forrest is sleeping in a hospital bed with his brother in a bed pushed up against his so if he needs to get up in the middle of the night he has help. Meals tend to be long drawn out affairs as he eats very slow now and is easily distracted or forgets what he is doing. We commonly remind him to finish eating and encouraging him to take all of his meds can be challenging.
In between times, Austin, Rae and Aunt Lynn (who has been here the last week) and Dad when he is there have to restock, cook, do the washing and cleaning and pick up meds and drive him back and forth (which is a two person job).
He is still wearing the brace for his L-1 fracture which is still healing. His incision for the cranioplasty is healing well but he does seem to have problems with initiating or starting activities since the procedure. We are trying to get the Dr.s to authorize another MRI to make sure his brain is handling the new lid put on it. We hope to have that scheduled tomorrow.
His physical progress continues to be nothing short of amazing with him being one of the most mobile guys in his group. He has troubles with micro-tremors still and they have slightly worsened since the procedure.
So here is where we are. He has made monster progress since this traumatic brain accident almost 10 weeks ago. He has made it from the dire prediction that he might never wake up to walking around an outpatient facility in just 10 weeks. He has made cognitive progress and has his language and his voice, however quiet it is at the moment.
On the reality side he has suffered a major brain injury and has and will continue to have lasting effects from it. As the Doctors and nurses who have worked tirelessly to help him have warned us that the hard part for us is when they turn his care back over to us. They were right, this is much harder and time consuming and you can’t turn your back on him for a second since he is so mobile. So if you have noticed some gaps in the frequency of the blog, you are likely to notice more. Mom, Dad and Austin will have a discussion as what to do about the blog in the future this weekend and decide how we can go forward. In the meantime we will continue on as best we can with our efforts obviously devoted to Forrest’s care.
Some people have commented that we have sugar coated the blog on occasion and they would be correct. Some of the ugliest, scariest and worse and depressing moments and discussions have never made it to the blog. That is because the blog was never meant and is not a clinical medical record. The blog was always meant to keep people informed of Forrest’s struggle for life and then surviving his various medical complications and also his victories and triumphs. He may read this one day and we want to let him know how many people were pulling for him. He will be impaired from his injury we know but he will continue to struggle and get better over time. We don’t know how much help he will need in the future but we will give him whatever help he needs to reach whatever goals he can. We appreciate your reading, support and comments in the blog. Many of you may not know or ever meet Forrest, but know that he is a remarkable young man. Through a lot of struggle and perseverance he will continue to be a remarkable young man, just different than before, but with a lifetime of relearning ahead of him. While it breaks our hearts to see him go through it, it makes us admire him that much more that he continues to try.
Much love to all,
Dad, Mom, Austin and this week, Aunt Lynn.
Montana comes to see Forrest
Tuesday, March 22, 2011
Forrest working with one of his new therapists at Shepherd Pathways
Sunday, March 20, 2011
Forrest's smile upon seeing Peyton
Saturday, March 19, 2011
Thursday, March 17, 2011
Wednesday, March 16, 2011
Forrest's surgeon takes off the head bandage...
Tuesday, March 15, 2011
Monday, March 14, 2011
Sunday, March 13, 2011
Some of the symptoms of ABI recovery at this stage include; trouble finding words, or sometimes mixing pieces of different memories together, or mixing similar sounding words up. Which is difficult when Forrest wants so badly to talk with his friends. His whole face lights up when he hears a friends voice on the phone. So it's hard to watch him struggle to organize his thoughts, find his words, to ask the right questions, to find the right answers. But through practicing in short conversations, he is slowly untangling his memories and the right words are beginning to return.
Sometimes the words are unexpected, but somehow just right. Yesterday, Forrest seemed unusually quiet, and of course a mother will worry. I asked how he was feeling, if he was feeling sad or tired, or if his back was hurting. He thought for a moment and responded, "I'm feeling sort of dilapidated and my back feels like custard." I'm no expert, but this word choice sounded pretty insightful to me! It's getting late now. Forrest and I are watching the "Oceans" movie again. The images and ocean sounds are reassuring to both of us and his eyes are closing. Sweet dreams, Forrest. Tomorrow's a big day… and we are all going to be thrilled to have it soon behind us. Austin or I will beat the drums when Forrest is out of surgery and back at Shepherd. It may be noonish, so please don't worry.
Love to all our friends and families,
|Talking with a close friend on a phone attached to the wall!|
|A little light reading… Spiderman comics!|
|Mom and Forrest getting a little exercise together…|
Saturday, March 12, 2011
Wednesday, March 9, 2011
This morning he was asking his nurse for a shower and she tried to explain to him that he had already had a shower. In an effort to help him remember, she showed him the computer record which includes the times of all his activities. When he read the chart and saw he had indeed had a shower 2 hours earlier, his eyes filled up with tears and he whispered, "I'm sorry, I don't remember that." I felt his fear, crawled into bed next to him and tried to reassure him that realizing he doesn't remember is an important step to regaining his short term memory. That it will come back. It's still very early in his recovery. Together, we can do this. One day at a time.
Proud to be, Forrest's & Austin's Mum
Quote of the day: "If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again." Flavia Weedn
Monday, March 7, 2011
Saturday, March 5, 2011
We started building Legos last night and worked again with them tonight. He is following the diagrams and picking out the correct pieces. After a while he tires and his hands start trembling, but it is wonderful being able to build together! We have received so many thoughtful and caring gifts from family, long time friends, and some from friends we haven't even met yet. One that recently touched all our hearts was from Olivia a 2nd Grader from Forrest's alma mater, Hill School. Olivia, who has written some wonderful comments for Forrest's blog, took it upon herself to sew a special pillow for Forrest. She picked the fabric out herself ( as she wrote "the color of the forest, because of your awesome name." ) and got her mother to teach her how to use the sewing machine so she could sew it herself. It arrived yesterday with a charming letter and we all agree, the pillow and Olivia are truly amazing! The pillow is just the right size and shape for snuggling. It is incredibly soft and Forrest has taken it everywhere with him! Sometimes the generosity and thoughtfulness of children just takes your breath away…Forrest will definitely want to visit Olivia at Hill School when we are able to come home!
Mum and Aunt Lobie
Quote of the Day: "Attitude is a little thing that makes a big difference." Winston Churchill
|Aunt Lobie dishes up her home made pasta!|
|Forrest departs for his MRI with Shepherd staff and Olivia's pillow!|
Wednesday, March 2, 2011
Forrest on his bike
Tuesday, March 1, 2011
He had a running game of Nerf basketball with Dad Sunday afternoon with him in his wheelchair and Dad running around trying to keep up with Forrest’s throws and movement. That provoked a lot of smiles and laughs on both sides. The real Wheelchair athletes had just finished their practice and we stayed out of their way slightly in awe of their efforts.
This morning it was up and at for breakfast and he ate the best I had seen him. Then a cough turned into a gag and it came back up. He managed the whole process well but was embarrassed that it had happened. His brain, throat, stomach are all trying to figure out this new system and some failures are expected to offset his notable progress. The whole nutritional aspect has just changed in the last few days since his stomach tube has been pulled and he must get all of his nutrition and medications orally the same way the rest of us do. So there is a bit more of a push to get food in him but as I learned it can be overdone and he is still figuring out when to say enough.
He did much better at lunch and dinner and had a busy schedule on various therapies. The most impressive was me getting ok to walk with him but he really needs very little balance help anymore and he walked down 4 flights of stairs today with his Physical Therapist. He is still working on the cognitive part and it is coming together slowly with him remembering some from the previous days and then forgetting things he had worked on earlier in the day. The brain is learning how to rewire itself and that involves how to lay down memories and make them stay. It is hard and sometimes frustrating work for him and sometimes it is a lot to do. He told me in a quiet moment that sometimes it is easier to live in his dreams that the real world is hard. He hurts and yet hardly ever complains and always wants to reassure whomever is working with him that he appreciates their help and has a smile and a handshake for them. Austin and Rae are reading Mind Storms a book by Ed Cassidy that I am about to download to my iPad . It goes thru the process that he and many of the other unsung heroes of traumatic brain injury are struggling with here at Shepherd. Check the blog from yesterday if you want to learn more about Shepherd Center.
He got to give a birthday gift to Dr. Kaelin his head Doctor that was a wooden plaque with a saying from John Wayne. “Courage is being scared to death but saddling up anyway”. That is the way it is sometimes here but Forrest’s jumps into to it anyway and enjoyed giving a gift to one of his favorite Doctors.
Other big news is that Forrest got to look at 3-D CT pictures of the prosthetic cranium that will cover the area of his Cranioectomy. Dr. Simon the plastic surgeon who will do the procedure came by and discussed it with Mom, Dad and Forrest. He showed us what it will look like and how he will put it on. It was very cool. I talked to Forrest about it later and told him I thought it was way cooler than the used sports car I had gotten last year which he is so fond of. So his response was, “So, do want to trade”? I told him I didn’t think his Mom would let us do that.
His Aunt Lobie arrived today and has started giving Rae and Austin a hand already. She took a great picture of our Green Team Forrest Shirts which we modeled. You may remember the pink ones from earlier. Both show our Team 44 spirit! I had to head back to work tonite and of course my flight got cancelled and I am now rerouting thru National airport so I can be at work and helping my wonderful crew at VEI who is holding down the fort while I shuttle back and forth to Atlanta. So I send this from my cab to Dulles in the middle of the night to my wonderful niece Lisa who started the blog and has agreed to post it so it will be up for the people who read it over their Wheaties in the morning. Austin will add the pictures later, so you’ll have to check back for that.
It is very hard to leave 44 and I miss him and Team Forrest terribly already. He and I talked about it and said it was ok as long as I come back soon! Count on it little buddy.
Quote of the day: ”Life begins at the end of your comfort zone”. Neale David Walsch