TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Brain Injury Association of Massachusetts’

SPEAK OUT! . . . . . . . . . . . . . . . . . . . Guest Blogger: Kristin Olliney . . . My Fight: The Reason to Advocate

My Fight: The Reason to Advocate

by

Kristin Olliney

(presented by Donna O’Donnell Figurski)

Girl Blogger cartoon_picture_of_girl_writingIsabella’s Acquired Brain Injury (ABI) is the result of sudden acute encephalitis. However, there was also medical error involved in her care. Given the many factors involved, it is difficult to prove which symptom caused what damage. Due to this, no one will ever be held accountable for what happened. As a result, there are four important reminders that everyone needs to know.

  1. It doesn’t matter where you live. Even in the best city, at the best hospital, with the best doctor, mistakes can happen. I am often told how lucky I am to live in the Boston area because we have access to so many medical facilities. While this is true, not all doctors and care are the same.
  1. Doctors are human. They are people who have studied medicine and, based on their knowledge, give you their opinion. It is not fact. It is opinion. Their opinion is their best guess. This is so important to remember, especially when given a prognosis. Isabella, like many other survivors, was not supposed to make it through the night, and yet she did.

    Kristin Olliney with Isabella 2014

    Kristin Olliney with Isabella 2014

  1. Always follow your gut instinct, especially if something doesn’t seem right. Ask questions. When Isabella first got sick, the Emergency Department wanted to discharge her with a stomach bug. I knew that there was something seriously wrong. I can’t explain how I felt – only that I just knew. I fought and advocated to get Isabella admitted into the hospital. One of Isabella’s specialists was on call, and he trusted my gut instinct. Later in the PICU (pediatric intensive care unit), as I watched my child fighting for her life, I was told by him and other doctors that my fighting and advocating saved Isabella. If Isabella had been discharged, she would have died. Always fight and advocate for what you feel is right. You know your child/loved one better than anyone.
  1. Get another opinion. When you are in crisis, there isn’t always time. When things stabilize, seek out another opinion should you and the doctor have a difference of opinion. On this journey, things can change. Opinions differ, treatment options vary, and, if there are fundamental differences, another opinion can help.

    Kristin Olliney & daughter, Isabella  2015

    Kristin Olliney & daughter, Isabella
    2015

For me, it is hard knowing that the doctors who cared for my daughter made mistakes. Coming to terms with the fact that no one will ever be held accountable for what happened to Isabella is difficult. I know Isabella is here because I fought and advocated. It is still devastating to know that mistakes could have been prevented. I am sharing this part of our journey in hopes that it will encourage others to continue to fight and advocate for their child/loved one. Against all odds, my amazing miracle is here today, and, for that, I am forever grateful.

To learn more about Kristin and Isabella, please visit Kristin’s website/blog at In An Instant Your Life Can Change Forever – Brain Injury Association of Massachusetts Blog

Thank you, Kristin Olliney.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Kristin Olliney.)

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Caregivers SPEAK OUT! . . . . . . . . . Kristin Olliney

 SPEAK OUT! – Kristin Olliney

by

Donna O’Donnell Figurski

Kristin Olliney with her daughter, Isabella, (age 4 1/2) on the day Isabella woke up from her coma. Kristin says, “It was the happiest and best day of my life.”

 

1. What is your name? (last name optional)

Kristin Olliney

2. Where do you live? (city and/or state and/or country)     Email? (optional)

Just south of Boston, Massachusetts, USA

3. What caused your survivor’s TBI?

Sudden acute encephalitis of unknown etiology

4. On what date did you begin care for your TBI survivor? Are you the main caregiver?

Our journey began on November 25, 2010 (Thanksgiving night).

How old were you when you began care?

I was 31 years old, and Isabella was 4.5 years old

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No, I was a single parent to Isabella.

6. Were you employed at the time of your survivor’s TBI?

No, I was laid off about 18 months before Isabella got sick.

If so, were you able to continue working?

N/A

7. Did you have any help? If so, what kind and for how long?

I was a single parent from the day Isabella was born. I have always been her sole caregiver.

8. When did your support of the survivor begin (e.g., immediately – in hospital, when survivor returned home, etc.)?

Isabella was 4.5 years old at the time, so I was already supporting her.

9. Was your survivor in a coma?

Yes, Isabella was in a drug-induced coma and then her own coma. The total time was 6 days. On the 7th day, she woke up. That was the best day of my entire life.

If so, what did you do at that time?

I never left Isabella’s side. I spent the first 73 hours without sleep because, if she was going to die (which she was supposed to), I didn’t want to miss a single second. I eventually collapsed, and I was forced to sleep. After that, I lived off coffee, and I took sporadic naps.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?

Yes, Isabella went to In-patient rehab [occupational therapy (OT), physical therapy (PT), and speech therapy (ST)] for 15 days post brain injury. She was there for only 13 days, due to my insurance. I was with her the entire time. Isabella is currently still receiving Out-patient rehab for OT and ST. Her PT ended last summer. Isabella also did aquatics therapy for a few months.

11. What problems or disabilities of your TBI survivor required your care, if any?

Isabella requires 24/7 care due to her extensive medical needs. She has a cognitive disorder due to her brain injury. Isabella has debilitating hallucinations (not psychotic) and anxiety, which causes multiple panic attacks every single day. She has migraines and tics. Isabella has sensory issues and Obsessive-Compulsive Disorder (OCD). She has learning difficulties. Isabella has aggression due to her inability to control or regulate her mood, emotions, and behavior. Isabella has speech difficulties, especially in word retrieval and expressing herself. Isabella also needs help with daily living skills, such as using the bathroom, getting dressed, showering, using the stairs, teeth brushing, etc. Isabella also suffers from various types of seizures and many other things that require around-the-clock care.

12. How has your life changed since you became a caregiver?

I was already Isabella’s caregiver. Prior to her brain injury, she had some medical issues, including life-threatening allergies to food, an immune deficiency (and another more serious one diagnosed post brain injury), and a few other conditions. Once Isabella got sick though, everything changed because I was parenting and caring for an entirely different child. It was like completely starting over.

Is it better? Is it worse?

It is different. It is challenging. It is amazing. It is heartbreaking. I wouldn’t want to be anywhere else. I want to be the one caring for my child. She needs me more now than ever before.

13. What do you miss the most from pre-TBI life?

I miss the Isabella that I used to have, although I love the Isabella I have now more than I ever knew was possible. I miss our carefree, social, active life. Isabella is worth it though.

14. What do you enjoy most in post-TBI life?

I have learned the value of life and how in an instant it can all change. It is both a blessing and a curse to know how fragile life really is. I appreciate the small things that most can’t value unless they have come close to losing it all. I cherish each laugh, each silly joke, the smiles, hugs, and kisses, and hearing Isabella say “Mommy,” and I notice things like the sunset (or, in our case, the sunrise too), the way flowers smell, etc.

15. What do you like least about TBI?

It’s the one of the most rewarding, yet most heartbreaking, journeys that you can go on. I hate that it has robbed Isabella of the life she was meant to have. This journey is also extremely isolating. I chose to focus on the positive and the blessing that I have, which is Isabella’s still being here.

16. Has anything helped you to accept your survivor’s TBI?

I have always been a single parent, so I had no choice but to accept it from the start. I think that was a blessing. Writing my bi-monthly blog, “Mommy of a Miracle,” for the Brain Injury Association of Massachusetts has helped me give a voice to our journey. I also started a Facebook support group, “Parents of Children with Brain Injuries,” which has helped me know that I am not alone. I knew statistically speaking that I was not the only parent with a child who has a brain injury, and yet I couldn’t find anyone.  This group has been the most amazing support for me.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes, how could it not? Brain injury changes not only the survivor but also the caregiver as well. Our home life is very structured and centered completely around what helps Isabella be successful. It has changed my relationships tremendously. In the face of a life-altering event, you learn quickly who is going to be there and who isn’t. I would rather have a few people whom I know I can count on than a whole lot of people who will just disappoint.

18. Has your social life been altered or changed and, if so, how?

Yes. Isabella and I had a very active social life. We were never home. Friends and family were always a huge part of our life. Now it is not possible, due to the extensive care that she requires and her instability. I no longer have the time to invest in one-sided friendships. We are not able to attend parties, get-togethers, events, and the like. Phone conversations are no longer possible. I only get to see a friend or a family member if he or she comes by at night when Isabella is asleep in bed.

19. What are your plans?

I live day-by-day. I take each day as it comes. Looking beyond that is too difficult.

What do you expect/hope to be doing ten years from now?

I hope that Isabella is doing better and stable. I hope that we are able to enjoy more things in life. Personally, I want to have a nonprofit organization to specifically help parents of children with brain injuries. I hope to be on the floor of congress advocating for change, for funding for research, and for additional resources for brain injury survivors and their caregivers.

20. What advice would you offer other TBI survivor caregivers?

Always follow your gut-instinct. You are your survivor’s biggest advocate. Stand your ground. Your survivor is not ever going to be who he or she once was. The faster you are able to come to that realization, the better off you will be. This is a journey, not a race. Take life one day at a time.  You are not alone.

Do you have any other comments that you would like to add?

Kristin Olliney with her lovely daughter, Isabella – 8 years old. 2014

Thank you for this amazing opportunity to tell people a little bit more about our journey.

 

Check out my blog: In An Instant Your Life Can Change Forever: Brain Injury Association of Massachusetts Blog – Mommy of a Miracle

Check out this video for Brain Injury Awareness.

 

Thank you, Kristin, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

If you would like to be a part of this project, please go to TBI Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Kristin.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.

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My name is Michelle Munt and this is my story about surviving a brain injury and what I continue to learn about it. This is for other survivors and their loved ones, but also to raise awareness of what can happen to those in an accident. This invisible injury too often goes undiagnosed and it can be difficult to find information about it. I will talk about things that have helped me as I continue to recover and invite others to see if it works for them too.

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