wayne crill

jen and wayne

"The world is not only stranger than we suppose,
it's stranger than we can suppose."

J B S Haldane

Wayne Crill

UPDATE: March 16, 2015
Greetings from Washington. Wayne flew first class from Denver to Seattle Tuesday 3/11. The trip went smoothly and Wayne seemed to really like being out and about. He was awake and alert most of the trip soaking up the change in scenery. He is adjusting well to his new home and surroundings. He is living in an adult family home (AFH) in Everett with 5 other adults ages 45-60. The home is owned and staffed by very caring Ethiopian caregivers. Wayne has his own room and there are several common areas and a deck where residents can be together. They enjoy family style meals here too. The home is in a quiet residential neighborhood about 30 minutes north of Seattle. Wayne will be receiving skilled therapy in this home (PT, OT and SLP). He has daily visitors from friends and family. We hope that Wayne will continue to improve in this environment and are in the process of scheduling medical appointments for follow up care here. The first 48 hours in Washington Wayne continued to be very alert, engaged and responsive. He has spoken more words and has been more consistent with yes/no head nods as well as many other 'Wayne' expressions. As most of you know, Wayne's alertness and level of engagement is highly variable. As a result we are trying to even out his activity level in an attempt to gain some consistency . We are in the process of getting Skype up and running and encourage friends to stay in touch. He has been enjoying the videos from Sender films and likes looking at pictures and, of course, listening to music. His address is 5210 Sunset Lane, Everett, WA 98203. You can email, call or text us if you have specific questions or want to Skype. Please refer to a facebook page that was set up after Wayne's accident, Team IronWayne, for more frequent posts. - Jen Fox

February 18, 2015
Jen Fox, here. Wayne's older but not oldest sister. My mom and I spent time with Wayne last week and I thought I would share how he is doing. For those of you who don't know, I am a physical therapist and have been working with people that had traumatic brain injuries for 22 years. It's hard to say that this makes Wayne fortunate, but at least I can add my perspective and recommendations to an incredibly tough situation. Wayne has been at Boulder Community Hospital in the inpatient rehab unit since after Christmas. While Wayne's brain is working hard to recover, his body is doing amazingly well. He is free of infections and his systems are healthy. One of Wayne's accomplishments while here is eating 100% of his food. He currently needs to eat a soft pureed diet and is able to do this with help. His rehab team has focused a lot on providing a regular schedule for Wayne. He is out of bed for the majority of the day and participating in a variety of therapies. He is standing with assistance and able to perform certain tasks with his left hand and occasionally with both hands. Wayne still is inconsistent with his attention and responses, but he is able to attend for longer periods. Depending on his interest in the subject or task he will indicate his wishes quite clearly, usually with a small head nod. He is full of smiles and does not seem to be in pain or uncomfortable. He is able to offer a hug to visiting friends and family. He has said 'I love you, yes, no and thanks'. A good friend told me that during the course of Wayne's recovery she has periodically been arm-wrestling with him and that now Wayne is able to beat her.

There are still several medical issues that are being investigated and he may have some surgeries in the near future if it is determined that these interventions would be beneficial. His family is working hard to determine the next setting for Wayne that will provide him the best care and opportunities for ongoing therapies. Thus, we have decided to transfer Wayne to the Seattle area. This was not an easy decision and we know is not ideal since Wayne's heart and so much of his support is in Colorado. Still, we know that Wayne has a limited amount of time to maximize his recovery from ongoing therapy and the best place for this is in Seattle. We appreciate all of your love and support and continued positive energy and prayers.

December 30, 2014
Wayne arrived at Boulder rehab yesterday afternoon. Today his therapists and doctor are getting to know Wayne a bit and have begun assessing and working with him.

December 20, 2014
Wayne's therapists and case managers feel that Wayne has made really good improvements over the past several weeks and decided he is ready for rehab. This is a big step! He has been accepted to Boulder Mapleton Inpatient rehab and he will move there on Dec. 26. His therapy will be more intense (at least 3 hours/day, 7 days/week) and his resting/downtime will be more important than ever. His insurance gives him 60 days max in rehab but they can pull him out early if they don't think he is making enough progress. The visitation guidelines will be stricter than at Care Meridian and his new therapists will guide us on the specifics. I will send more info regarding visiting hours once he arrives and is evaluated.

November 25, 2014
I know many are wondering how Wayne is doing and it's been a while since the last update. It is challenging to give a comprehensive picture of Wayne's condition. On one hand he is non-verbal, cannot walk or do things to take care of himself. The first 3 months, a critical time for recovery from traumatic brain injury, have come and gone. This leaves some doctors less than optimistic about his recovery. On the other hand, he continues to make progress every day. If you visit him you can see the determination in his eyes and you can witness the physical efforts he is making to do all he can to recover. He is trying to talk, he pushes his feet around trying to move his wheelchair, and he tries to get out of bed. He follows some commands. He smiles and he cries. He has come a long way in three months considering the extent of his head injury.

For now Wayne will not be getting a shunt. As long as he continues to make progress his doctors feel that there is no reason for a shunt and his family agrees. He is not yet ready for rehab, but hopefully he will be able to go within the next few months. In the meantime Care Meridian is a great place for him. We are able to take him outside for sunshine and fresh air every day. He works with speech, physical, and occupational therapists on weekdays. He is surrounded by caring people and his spirits are high. Love, Tessie

November 1, 2014
Wayne's new digs: Care Meridian (in Littleton) is an awesome place and a good fit for Wayne right now. It is more like a 'pre-rehab' than a skilled nursing facility, and they will work hard with him to get him ready for a regular rehab facility. He will be doing a lot more therapy- working with a physical therapist, occupational therapist and a speech therapist every day (except weekends). He has really enjoyed looking at the mountains and watching the few birds we could find. Regarding the recent CT scan of the brain (mid-October): the midline shift in his brain showed really good improvement. The subdural hematoma of concern is still there but smaller than before. His ventricles are still swollen.

Most of Wayne's bones are looking pretty good right now. He still has a cast on his right wrist for the scaphoid fracture which takes a great deal of time to heal since it is a bone that gets limited blood supply. The wrist will be imaged again soon to see how the healing is progressing. Wayne's elbow is also going to be an ongoing issue. The problem is that he has a large heterotopic bone formation - a tough problem that can require a up to a year to solve. Heterotopic bone formations occur when there is a hematoma around a fracture. When the fracture heals, osteoblasts fill the hematoma and bone grows throughout the hematoma. Heterotopic bone formations are 10x more common for TBI patients after they have a fracture than for fractures when there is no head injury. These are a long-term problem and can take a year to mature. If you cut them out too early, they just grow back. His ortho doc said that Wayne will need surgery on this, but it has to be many months down the road. Down the road, a bone scan will have to determine when the heterotopic formation stops growing, and then they can cut it out. We need to be careful around his elbow because Wayne has so much pain with it. The therapists will continue to work with it to help Wayne maintain the function that he still has in it though. [ older updates below...scroll ]

TEAM IRONWAYNE FB

October 20, 2014
Today Wayne had an appointment with a neurosurgeon at Kaiser. He is now completely in the Kaiser system and will no longer see St. Anthony's doctors. The neurosurgeon we saw today was not the same Kaiser Dr. who saw Wayne 3 weeks ago as that doctor is currently in Africa (let's hope not west Africa). We discussed the CT scan of the brain from last Monday and compared it with the CT scan from 3 weeks ago. The midline shift in his brain showed really good improvement. The subdural hematoma (bleeding) of concern is still there but smaller than before. His ventricles are still swollen and basically the same as before. He said he is not sure a shunt will help Wayne because the hydrocephalus (ventricles swelling) does not appear to be suppressing Wayne's ability to be awake and alert. A shunt usually helps people most when they are having trouble with wakefulness and alertness. He definitely thinks that a shunt remains an option since we will want to do everything we can to maximize his recovery. But he wants to wait until the hematoma is completely gone before considering a shunt.  He estimated that could be 2-4 weeks from now. Wayne will have another CT scan on October 31 and a follow up neuro appointment on Nov. 3 to discuss the next steps.The neck collar will remain on for at least 2 more weeks. The scan showed there is still some healing to be done and more bone growth needed in the fractured C-1 and typically a person wears a collar for 12 weeks for this kind of injury. He imagines that Wayne can get the collar off in the beginning of November.Wayne saw an orthopedic (bone) doctor at Kaiser last Friday. Most of Wayne's bones are looking pretty good right now. He still has a cast on his right wrist for the scaphoid fracture which takes a great deal of time to heal since it is a bone that gets limited blood supply. The wrist will be imaged again in 2 weeks to see how the healing is progressing. Wayne's elbow is also going to be an ongoing issue. The problem is that he has a large heterotopic bone formation - a tough problem that can require a up to a year to solve. Heterotopic bone formations occur when there is a hematoma around a fracture. When the fracture heals, osteoblasts fill the hematoma and bone grows throughout the hematoma. Heterotopic bone formations are 10x more common for TBI patients after they have a fracture than for fractures when there is no head injury.  These are a long-term problem and can take a year to mature. If you cut them out too early, they just grow back. His ortho doc said that Wayne will need surgery on this, but it has to be many months down the road. Down the road, a bone scan will have to determine when the heterotopic formation stops growing, and then they can cut it out. We need to be careful around his elbow because Wayne has so much pain with it. The therapists will continue to work with it to help Wayne maintain the function that he still has in it though.Since Wayne is medically more stable now he will be leaving Kindred facility this Tuesday afternoon and going to a skilled nursing facility (SNF) called Care Meridian in Littleton. This is actually a great place for Wayne to go as he will get more therapy and rehab attention. They are one of the few facilities in the state that specialize in working with young people and also brain injuries. In fact, no SNF (that work with Kaiser insurance) in Boulder would even take Wayne because he is so young. Care Meridian is designed to get Wayne ready for rehab where he will most likely go in another month or so. Wayne's insurance only allows 60 days of rehab so we don't want Wayne to go there until he is ready to get the maximum benefit from it. There've been lots of updates from friends about personal interactions with Wayne. He definitely interacts more and more with us these days and it often appears he is trying to say something but can't quite make it happen yet. He seems to understand a lot of what people are saying to him and in front of him. He gives out lots of smiles but is showing other emotions now too. Please keep coming to visit him. I know it stimulates his brain and lifts his spirits so much!
Love,
Tessie

 

September 30, 2014
Sorry for such a long delay in giving a Wayne update. Wayne continues to make progress and has days when he is more awake and responding to some commands and smiling at visitors, and other days when he sleeps most of the time. He has been able to go outside a few times with the assistance of a rehab aide. It has been more than two weeks since his bone flap surgery and today a CT scan confirmed a similar amount of fluid in his head as was seen in the CT scan immediately after the bone flap surgery. These swollen ventricles are not an immediate threat but are possible a reason why Wayne is so sleepy and may not be progressing as quickly from a neurological perspective. This situation could possibly be alleviated by placing a shunt in his head. Today Wayne was evaluated by a new neurosurgeon whose advice seemed appropriate. We will likely wait two weeks and have another CT scan to re-evaluate the situation. This surgeon wants to hold off on a potential shunt surgery until 1) Wayne's C.diff is completely eradicated from his intestines since part of the shunt drains into the abdomen and we want no infection risk and 2) the subdural hematoma (blood/bruising) that still exists in Wayne's brain.For now, he will be at Kindred Denver at 19th and High for the next two weeks. Visitors are highly welcomed, especially Tues, Thurs, Sat and Sunday DAY and any evening. High stim times are generally 12 - 2 and 4 - 6. However, you can still come see him during low stim times, and if no one has been there during high stim times, then low stim can become high stim times. :)  Wayne's sister Jen put a list of guidelines on the wall for being there with Wayne, but please feel free to interact with him as per her suggestions and stay for a few hours. He does really well when he feels the positive energy and love in the room.

Thanks to all of you who have written and called, who have brought us food and helped with Kaiden and Libby,
and for all of your good wishes and prayers.

You are all so dear to us. Please keep sending your good energy and prayers to Wayne.
Much love,
Tessie


September 18, 2014
As you know, Wayne had his bone flap replaced a week ago. So far he seems to be doing well but the next few weeks will tell us much more. His visible neurological function is the best indicator of how he is doing and so far he seems to be about the same. I am told to expect a waxing and waning (Wayne always disliked this term) of function and not to be too alarmed at decreased function in the short term. Over the past several days I have seen him at his 'best' (eyes open for several hours, watching Kaiden and me, smiling on occasion) and also I have seen him at his 'sleepiest' and most inactive. The cat scan 5 days after surgery showed he had some areas of swollen ventricles which is not too alarming - it does mean he has more than normal CSF (cerebral spinal fluid) in his head. This fluid can depress neuro function and could ultimately lead to another surgery to add a shunt (to help alleviate pressure by draining CSF). Putting in a shunt increases risk of infection and risk of infecting and losing the bone flap, so doctors are trying to avoid this surgery if possible and give Wayne every opportunity to absorb the fluid himself over the next two weeks. He will be at Kindred LTAC (long-term acute care) for now and then go back to St. Anothony's for another cat scan and reevaluation by his neurologist and neurosurgeon at the end of this month. We would love to have you visit if you are able to make it to Kindred Denver. Send me a note and I will let you know the best times to head down there. We are trying to spread out the love a bit so he can see friends on most days and not have a ton of folks all at the same time with no other visitors for the rest of the week. Thanks for all your positive thoughts and loving messages.

We love you guys and wouldn't be so strong without all your support!
Love,
Tess & Kaiden

 

September 9, 2014
Quick update here. Wayne left Kindred yesterday to have a CT scan because fluid was beginning to accumulate in the empty space in his head where the bone flap has been missing. It was decided to send him back to St. Anthony's so his neurologist and neurosurgeon could evaluate him further. The fluid accumulation is not too serious. The doctors have decided he is sufficiently healthy so they can replace the bone flap now. His C. difficile has cleared up and his lung infection(s) seem to be under control. He is set for surgery tomorrow (Wed) at noon. This is a good thing. Hopefully the bone flap replacement will bring further brain healing and function in the very near future. Send prayers and positive energy that the surgery goes well and for zero infection. You only get one chance with a bone flap replacement. I will keep you posted on progress and when/ where to visit again. He will most likely return to Kindred in Denver after he has recovered here at St. Anthony's for a day or two, depending on how smoothly everything goes.

Love,
Tess

 

September 4, 2014
Wayne is holding steady and was transported to a new facility, termed LTAC (long-term acute care). He will have a brief return to St. Anthony's in a few weeks to have his bone flap replaced. Kindred will provide Wayne more attention with his recovery and assistance to prepare for rehab than he is able to get at St. Anthony's. I am not familiar with policies at Kindred yet but I hope that you will be able to visit as often as you like. Wayne has been opening his eyes and giving out smiles to several friends who have caught him at the right time. His progress is slow and steady and all the warm wishes and prayers are working!

Much love to you all,
Tessie, Kaiden & all of Wayne's family in WA state

 

August 27, 2014
Wayne is steadily improving each day and has moved out of ICU to a neuro-trauma unit at St. Anthony's.  The swelling has gone down significantly on the left side of his head and his doctors are discussing replacing the bone flap very soon. He has made improvements neurologically as his brain continues to heal and form new neural pathways.  He has had successful surgery on his clavicle and elbow and his bones are on their way to mending. Visitors are welcomed now. We'd prefer not to overwhelm him with too many at once, so please get in touch if you want to come by. Afternoons are usually better since his doctors and other therapists are with him in the mornings.

Thank you again for all the love and support. 
Love,
Tess 

 

August 21, 2014
Wayne's eyes are opening now and he is looking around. We are very excited about his progress. We are still uncertain what he is taking in and processing. His facial expressions are very limited but he notices voices, looks at people, and makes eye contact. He is still not following commands but hopefully soon. That is a requirement to get into Craig rehab. Please continue the good energy and prayers you are sending his way.He is on two 'wake-up' drugs right now which he receives during the day. At night he is given Ambien to help him sleep. These drugs help regulate his sleep-wake cycle and help stimulate him during his waking time.He has not had the clavicle/elbow surgery yet because of infection. This has actually been a blessing in disguise because it prolongs his time here in ICU where he receives the best care. We are still trying to find a loophole to get him into Craig rehab since his insurance (Kaiser P) does not work with Craig. All for now.

Thank you again for all your love, prayers and support. 
xoxoxo
Tess, Kaiden and family

 


August 19, 2014
There is not too much to report on Wayne's condition but I felt I should send something to you because I am sure you are wondering. His neuro exams have been very similar over the past few days. He is still moving his left leg a lot and often the fingers on his left hand and occasionally he lifts his right arm. He opens his eye lids but doesn't look around, just straight ahead, not focusing on anything. The doctors give commands like 'stick out your tongue', 'squeeze my hand', 'wiggle your toes' or 'look over here' but he does not follow them. Wayne is breathing on his own now during the day. They put him back on supported breathing at night to give him a rest from working so hard. He continues to run a fever, not uncommon to those who've suffered a brain injury. He has a surgery scheduled this week to repair his clavicle and elbow.  His neurologist, Dr. Yarnell, says the brain swelling is still going down. As of today Wayne went off of the anti-seizure meds he started on day 1, which can cause drowsiness. He also started a 'wake up' drug this morning, to help induce some alertness. Dr. Yarnell is still hopeful that with time Wayne will come around. He suffered a very, very serious head injury which takes time to heal. How long is uncertain. The best thing we can give to Wayne is the quiet time and space necessary for his brain to heal. I know so many of you are anxious to visit him, but it is still not a great time to have visitors.  I spoke with Dr. Yarnell today about visitors and he said he would allow one person to see him for a few minutes at a time, and only a couple people total each day. If it's important that you see Wayne soon, then please get in touch with me to figure out a good time. Otherwise I truly appreciate your patience. There is so much love and energy flowing towards him right now, I am sure it is helping to support and heal him.

Thank you so much. And please don't stop!
Much love,
Tessie

 


August 16, 2014
It's hard to believe a week has already passed. It seems like one long day and one long night since Wayne's accident.Wayne remains stable and has shown slight improvements that keep his doctors (and us, of course) optimistic. The doctors have told me that the best way to tell how Wayne is doing is not through any further imaging but by watching him during his neurological exams. During these exams they pinch him, yell at him, poke him etc. He is responds well to pain but does not respond to commands. He is opening his eyes quite a bit now. But he is not focusing on anything or anybody, no eye contact. He doesn't open his eyes on command or necessarily to anyone talking to him but he does open them in response to pain. It's more like his eye lids open but nobody is home yet. Each day his neurological exams are slightly better and that is encouraging to everyone. It's as if his state of consciousness is lightening slowly day by day. The doctors are hopeful he will wake up sometime within the next few days. He had a tracheostomy yesterday and will have a feeding tube placed into his stomach today. There are no more tubes going into his mouth. His lungs are doing much better. They are starting to wean him off the ventilator and making him breathe on his own for a period of time each day. They will do surgery next week to repair his broken clavicle. Some of you have asked how Kaiden is doing. He knows that his daddy fell and hit his head while climbing in Eldo, and that he has to sleep for a long while until he is better.  He is not upset by this though he misses him a lot. He's been busy with big adventures over the past week ... wearing dresses and lipstick with the Murphy girls and having some good times with his pals Ivan and Corbin.Thank you all so much for your love and support. It means the world to us right now.

Love,
Tessie

 

August 14, 2014
Yesterday afternoon Wayne had another CT scan on his brain. After the CT scan the doctors decided he was stable enough to remove the monitors he had in place in his brain (pressure and oxygen monitors) in order to do an MRI which he had this morning. The best news we got from the MRI is that Wayne does not have any brain stem damage.

This is HUGE. His brain does have lots of bruising. I am unclear if there will be more information coming from this MRI or not.Wayne is still not following commands. He continues to move his legs and hands and will slightly open an eyelid but not regularly. I think he is still in a deep sleep, where he needs to be, and is giving his head all the rest it needs to recover. He will wake up when he is ready. We are trying to keep stimulation and noise to a minimum and let him rest as much as he needs. 

Will keep you posted.

Love,
Tessie