Sunday, January 27, 2013

Some details...

How is Miss Riley? What are her days like? What can she do? What will she be able to do? Where will we go when we discharge from CHOC? Will we have help if we go home? What do you have to do to take care of Riley?

These are some of the questions we have had recently. I am going to do my best to articulate what Riley's situation is and perhaps answer some of these question more specifically.

Riley had her trach/gtube surgeries/procedures on Wednesday. Since then we've been working with the doctors/nurses to keep her comfortable and pain free. Just like any of us after a surgery we want to make sure we manage her pain/agitation. As of this morning she is only on Tylenol as needed and we've held off on giving her Ativan except for during the night so she can sleep better. After rounds this morning it was discussed to switch her to a muscle relaxer (less of a sedative) to see if that can help with her overall level of comfort.

How awake is Riley? When we say Riley opens her eyes and wakes up, it is not an awake state as you would normally imagine. Riley opens her eyes periodically throughout the day, some awake periods are more interactive and some are not as much. With each passing day, when she is awake, her state seems to us (and the nurses) to be more connected and more there. Hard to explain. For instance this afternoon she was awake for over an hour looking at us and letting us sit and talk to her and massage her arms and legs.

There is a scale used in adults to describe the time post TBI (Traumatic Brain Injury), we can use it loosely to relate it to Riley however, due to her age it is not an exact scale in relationship to her specific state etc. On the severity scale she rates on the high end of moderate. This level indicates that with therapy and rehab she can make a recovery to some extent. To what extent is the unknown.

Glasgow Coma Scale
There are a few different systems that medical practioners use to diagnose the symptoms of Traumatic Brain Injury. This section discusses the Glasgow Coma Scale. Click on the link to find out more information about the Ranchos Los Amigos Scale.

The Glasgow Coma Scale is based on a 15 point scale for estimating and categorizing the outcomes of brain injury on the basis of overall social capability or dependence on others.

The test measures the motor response, verbal response and eye opening response with these values:

I. Motor Response
6 – Obeys commands fully
5 – Localizes to noxious stimuli
4 – Withdraws from noxious stimuli
3 – Abnormal flexion, i.e. decorticate posturing
2 – Extensor response, i.e. decerebrate posturing
1 – No response

II. Verbal Response
5 – Alert and Oriented
4 – Confused, yet coherent, speech
3 – Inappropriate words and jumbled phrases consisting of words
2 – Incomprehensible sounds
1 – No sounds

III. Eye Opening
4 – Spontaneous eye opening
3 – Eyes open to speech
2 – Eyes open to pain
1 – No eye opening

The final score is determined by adding the values of I+II+III.

This number helps medical practioners categorize the four possible levels for survival, with a lower number indicating a more severe injury and a poorer prognosis:

Mild (13-15):

More in-depth discussion on the Mild TBI Symptoms page.
Moderate Disability (9-12):

Loss of consciousness greater than 30 minutes
Physical or cognitive impairments which may or may resolve
Benefit from Rehabilitation
Severe Disability (3-8):

Coma: unconscious state. No meaningful response, no voluntary activities
Vegetative State (Less Than 3):

Sleep wake cycles
Aruosal, but no interaction with environment
No localized response to pain
Persistent Vegetative State:

Vegetative state lasting longer than one month
Brain Death:

No brain function
Specific criteria needed for making this diagnosis

Riley is going through what all TBI patients go through after their injury. She's in a period of recovery and IS making the slow steps we'd expect. The stages range from unresponsive to agitated responsive etc. Of course, in a perfect world we'd love to have Riley wake up, be instantly alert and move on with her normal life. This just isn't the way things will be.

As we've mentioned before Riley's road is going to be LONG. Most of what happens over the next weeks and months is going to be dictated by what Riley does. We know loosely what we are going to do to assist her as she gives us clues to what she needs most but, the reality is only Riley can truly control what happens.

What do we know for sure?
After a discussion with the ST Friday afternoon, we were told that in order to discharge to a inpatient rehab facility Riley needs to be an active participant in therapies for at least 3 hours/day. Active means that she purposely responds to the activities they have her participating in. It is entirely possible for this to happen over the next week but, it may not. If not, we will head home and Riley will participate in outpatient rehab.

Now, Riley is a very different TBI patient. An adult would most likely not go home. Many of you may know adults who have gone through something similar, the next step after the initial hospitalization is a rehab facility. Being at home ultimately may actually be better overall for Riley's long term recovery. Why? She'll be home, around her family, brothers and especially her twin, bathing at home, sleeping at home and participating in our family activities. She'd go in/out of her carseat and ride in the car, all activities that actually aide in the rehabilitation process for a child Riley's age. Where we are torn is if we have the choice on which path to take inpatient vs. outpatient, what will be BEST for Riley? This is where the next 5 days will be critical as we work with the doctors/therapists/nurses to determine where we go from here.

We have termed tomorrow morning as "game on" time. We've allowed Riley the days she needs to rest and recover from her surgery and now we need to see what she can do. We will be following a day/night schedule (dictated largely by what our normal home life would be) and pushing Riley as much as we can during her therapies so we can see what she can do.

We know what we see happening and the progress she has been making and we are faithful that she is headed in the right direction. We know that if therapy wouldn't help Riley, there wouldn't even have been mention of it and we would be faced with a child who persisted in a semi alert state for the rest of her life. Thankfully, Riley is at a point where therapies and youth are going to do the most for her and her future.

I received an email from a mom in TX who has a 5 year old little girl who went through something very similar to Riley as an infant. I've hoped that through the power of the internet someone, somewhere, would stumble upon the blog and relate to our story. Her daughter after many years of therapy is now a healthy, active, athletic 5 year old. Stories like this are what give us the hope and faith we need as the what ifs can consume your thoughts if you don't know that recovery does exist.

I hope this helps to explain what has been going on the last few days and paints a more vivid picture of what we are dealing with day to day. Dave told me that he didn't think I was relaying correctly what we are dealing with. If you have any other questions please email me and I will try and answer them!

We're praying daily that Riley continues down the path to recovery and continues, at her pace, to make the progress she needs to. We pray that we can again make the right decisions when it comes to Riley's next steps. With so many different teams and doctors watching over Riley we've had to really dig deep to figure out what they know is beneficial for Riley and what they assume is beneficial to Riley. A child that presents with her type of case perplexes the majority of the professionals. As with most TBI patients there really isn't a book or clinical study to tell you exactly what her outcome will be. They've given us the hope and faith and belief in our daughter and now we are making sure Riley knows the depth of our hope, faith and belief in her as well.

I'd like to leave you with some collages of all of you in your Team Riley shirts that I made this morning. If your picture hasn't made it in to the collage yet, don't worry I'll update them as I get them. We can't thank you all enough for taking the time to represent our little girl and share your picture with us. I'm off to pick up prints from the CVS across the street and decorate Riley's walls with all of your smiling faces.

Please continue to pray, think about and send all of your positive energy to our little fighter. She continues to need each and every one of you.

Dave, Megan, Logan, Mason and Courageous Riley


  1. Megan I read your blog every day. I want you to know my family is praying for sweet Riley. I pray every time she crosses my mind(which is more times than I can count in a day) The Lord loves you all so much and I wanted you to know that He is urging us way over her in North Carolina to fight for Riley with prayer. You are amazing! I am so filled with love for you even though we haven't spoken in years. Thank you for the wonderful updates.
    Amy Kronquist-McCoy

  2. As courageous as that sweet baby girl is, equally so are her mom and dad. Sharing her story and prognosis takes some guts just to actually put 'pen to paper.' I applaud from us

  3. Megan I started following your story sometime back via Julie Andress, and have been coming back to check on Riley s progress. I continue to pray for her recovery and your strength as a family. It amazes the love and support of your family and the community around you. I hope to read more good news as time passes and wish for nothing but the best for you and your family. God bless.