Sunday, May 17th Update

Update From TIRR Houston Rehab

Apologizes for not getting these updates out as often as I would like. I will do my best to get out weekly updates and we continue to appreciate your support and prayer for Raygan. It is really helping her we know!

Raygan’s Thinking

There is no doubt that Raygan’s thinking is clear, she is just limited in how she can communicate with us.  She answers basic knowledge questions (colors, objects, etc) 100% correctly.  She answers basic math questions (25-24 = , 3+2 =, 2×2 = ) although right now with her limited ability to communicate answers, we are keeping it to answers that she can hold up fingers on one hand to answer.    We do think that she does have some troubles remembering month/day/year and locations.  Since we use our phones so much it is not surprising she doesn’t know month/day/year but she also cannot remember what state/city she is in.  This is normal for TBI patients and should improve over time.

Communication

In addition to turning her head left and right, she can now give thumbs up/ thumbs down responses if we support her forearm.  She also sometimes nods her head for yes as well.  She can use her left thumb and fingers fairly well so we have been trying different ways to let her communicate.  Jackson finished up the spring semester at OSU and was down here with us for a week.  He brought his xbox controller with him and he hooked it up to my computer and configured it to control the mouse.  He found a website that created a large board on the screen with different large squares that have words and sentences.  She was using her thumb to move the knob on xbox controller to move the cursor over the words/phrases.  The challenge is that her right hand movements are not good enough yet to hit the button on the controller to select the object on the screen she is trying to select. The Speech Therapist has tried several adaptive devices to plug into communicatin screen they have but none of the ones they have quite work for Raygan.  She is going to have the rep from the adaptive devices company they work with come in and work with Raygan to see if we can find a device/method that will allow her to communicate easier than just nodding her head or thumbs up/down. 

in her jaws and temples to help loosen up those mouth muscles and hopefully let her open her In addition, the Speech Therapists have been putting a speaking valve in her ventilator that would allow her to speak if she could.  It does route the air from the ventilator differently through her nose and mouth more like normal breathing so in addition to allowing her speak when she is ready, it lets her start to feel what normal breathing is like again.  That is one thing that might encourage her to start swallowing again which she has not to date.  She also clinches her teeth together and won’t let therapists open her mouth to get to her tongue.  Getting to her tongue is important so they can start doing techniques in the back of her mouth that can encourage swallowing.  To help with that, the doctor has given her Botox injections mouth.  We will see if that works or not.

Physical Movements

At this point, Raygan has been able to demonstrate to us that that she can move just about every part of her body both left and right side.  Her left hand movements are still stronger but her right hand can move some.  All her movements are slight and usually have to be supported to help movement but she has moved both her hands, arms and legs.  Therapists have supportive contraption to support her arms on supports attached to springs hanging from support bars above her.  This allows her arms to hang free and she can try to move them which she can.  I bought this sticky tic tac toe board that uses ping pong balls she can pick up and drop where she wants to play.  With a little bit of directional help, she reaches down and grabs the ping pong ball and then we guide her over the playing board and she drops it where she wants it.   She can also play thumb wars with us and is very good at it with her left side.  Music Therapy has given her drum sticks and put a drum in front of her and she very slightly hits the drum.  They brought a therapy dog around and gave Raygan a ball to pick up and give to the dog.  She did this and one time she accidently dropped the ball as she was trying to get it over to the dog and it fell in her lap and immediately she clinched her legs together to try to stop the ball from falling to the floor.   The therapist have hooked her up to both stationary bikes she can use from her wheelchair and to a bike cycle wheel she drives with her arms and the machine helps her move and then stops and lets her turn it when she can.  It is very slightly movement with those devices but it something and you can see she is firing her muscles to try to use her arms and legs.

Staying Alert

Staying alert is one of the biggest challenges Raygan has right now.  In the morning she has much more energy and alertness than the afternoon evenings.  She will appear to fall asleep (close her eyes) during activities often and the we move her around/move her head back and forth to “wake” her up again.  We can’t really tell if she is actually sleeping or just exhausted or a combination of the two.  Sometimes she keeps her eyes open and is alert the whole activity and sometimes not.

Heart Rate/Blood Pressure

Another common struggle we are having is that either her blood pressure drops too low or sometimes goes high.  80’s/50’s  or 140’s/100’s.   Also her heart rate goes up to the 120’s/130’s.  Both are being managed by medications but it seems like the right balance hasn’t been found yet.  It is hard also because we are getting her up and down and making her exercise which affects both measurements.

Breathing

Raygan still hasn’t been able to be weaned off the ventilator.  Some days/weeks she does good with trials to turn down the settings and others she doesn’t.  She was tested and confirmed that she had a respiratory infection last week and she has been on antibiotics for that.  The last few days she has been doing really good so hopefully she can start on the weaning protocol soon.  The doctors really don’t have a high confidence level that she will be able to wean of before she gets discharged but we will see.  She has been able to tolerate not having any extra oxygen given though which is good.  She is just breathing room air with the ventilator.  Katherine and I have gotten the training and practice with the ventilator for approval to take her out of the rehab floor by ourselves and down to the therapy gym on the first floor and to take her outside to the front patio by ourselves.  We really don’t have time to do that on the week days but on the weekends we are now doing that.  It is nice for her to get out of the room when possible and outside in the sunshine.  There is a big tree in the front of the rehab with patio that is nice to sit out at.

Thank you for the continued prayers for Raygan!

Praises To God For:

• All the talented therapist and medical staff at TIRR.
• Continued signs/movements from Raygan of advancing in her abilities.

 Need Prayers For:

• Raygan being successful in her trying to wean off the ventilator.
• That her brain heals enough that is doesn’t cause the neurologic storms conditions without medications to control it.
• Her brain tissue to heal more allowing more functionality and ability to interact with her environment.

Prior Update From Middle Of March
Raygan was put in a medically induced coma state back on Jan 27th by giving her sedation medications. They kept her sedated for a little over a week. It’s now been 47 days since she was taken off sedation medication. During those 47 days she has been unconscious. I want to try to describe Raygan’s situation in a little more detail to help each of you understand better and be able to pray for her more specifically.

It is normal for traumatic brain injury patients to take along time to “wake up”. The brain damage that the the secondary brain injuries caused (brain swelling and stroke being the worst of those) was significant and the worst part of that damage was in the lower brain/ brain stem area which is the part of the brain that is basically the light switch of a person’s consciousness. It is the part of the brain that affects our ability to wake up. Damage to areas in that part of the brain are permanent because the issue in that area does not regenerate like areas of the upper brain can. From MRI’s and CT scans, the doctors tell us that significant parts of her brain stem are damaged and dead but the scans do show small areas of living tissue mixed in. It’s kind of speckled looking when you look at it on the images. So we just don’t know what the long term effects of the damage are going to cause for Raygan.

Worst case is that there isn’t enough functioning parts of her brain stem for her to be able to wake up. The best case scenario is that she can wake up and just has disabilities. The brain stem not only affects consciousness but also controls involuntary movements as well as some voluntary movements of the body. Things like breathing, pain responses, reflexes, coordination, arm and legs movements all are controlled from this part of the brain. The medical staff measure consciousness on a scale that involves measuring the eye pupils reactiveness to light or lack there of, her response to pain from doing things like pinching her, basic reflexes like a cough/gag reflex, her being able to move her body actively in any way and her ability to respond appropriately to verbal commands.

For far, there have been a few a few things that show signs of at least basic involuntary or reflex movements. The one consistent sign of responsiveness as been the reactiveness of her eye pupils to light. That has been the one consistent thing that the doctors say indicates that at least some of the brain stem is functioning. On a handful of days for short durations we have seen her eyes moving back and forth under her eyelids, she had blinked her eyelids very slowly a couple o times, she has slightly moved her head back and forth like she is shaking, she has had slight responses to pinches like slight movement of her left arm up and she has slightly moved her left hand and fingers. I would say that there has been about 10 days where we have seen these kind of movements.

She has been on the ventilator since being admitted to the hospital the second time. They have tried multiple times to take her off the ventilator but her breathes are not strong enough to get enough oxygen and get rid of enough carbon dioxide. When I say that she is breathing on her own or leading the ventilator, I mean that she is still on the ventilator but the machine waits for her to initiate the breath first and then it just adds additional air volume in and air removal enough to match what a healthy person would do. She had gone for a maximum of two days in a row leading the ventilator but then she gets tired or something causes her breathing on her own to get worse and they they switch the ventilator to actively push air in and remove air out. That setting still does allow her to start a breath on her own in between automated breaths but it makes sure a specific number of air in/air out events happens in every minutes.

The ultimate short term goal is to get her to the rehab in Houston called TIRR which is the best in the country for dealing with her kind of brain injury.

I hope this additional information helps all of you better understand. We are so grateful for each of you taking time to help us acknowledge the power of our Creator and pray for his intervention in Raygan’s life at this time. We love y’all and we know Raygan does too!

History Of What Happened To Cause Raygan’s Injuries

For those of you that didn’t have the details of what happened to Raygan, we wanted to provide a few details. Raygan has been going to graduate school in Delaware studying Music Performance. On Friday, Jan 23rd, Raygan was riding her electric scooter home from a friends house. We do not know how it happened but she fell off the scooter while riding on the sidewalk, hit her head and was knocked unconscious on the side of the road. A good Samaritan found her and called 911. She had one fracture and two small brain bleeds. She initially recovered enough that the hospital discharged her to our care on the following Monday but by Monday night we had her back in the emergency room. Since that time, her condition rapidly declined with complications of traumatic brain injury. The doctors tell us that she has sustained significant and permanent brain damage. With God’s help and will the support of many prayers from all her family and friend, she has gotten over many hurdles but she has miles yet to go. We created this page to provide updates to her situation and to ask for specific prayer requests for healing and be able to collectively pray for Raygan. We love and appreciate y’all for uniting in pray with us for our beautiful daughter!