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Courageous Parents Network
United States
Приєднався 19 гру 2013
Courageous Parents Network channel features videos of parents of children with serious, life-threatening illness sharing their experiences across a wide range of psychosocial and emotional issues. It is not disease specific but is for anyone who is seeking community and a desire to hear from other parents to know that they can do this. Issues explored include: coping with the diagnosis, spirituality, marriage, caring for the other healthy children/siblings, working with the medical team, self-care, control, decision-making and palliative care, questions about end-of-life, transitioning to end-of-life, bereavement, parental identity, and meaning making. Videos also include a pediatric psychologist and grief counselor who frames the issues, a palliative care doctor, a palliative care nurse, and a chaplain.
CPN In the Room June 2024 "What If I Regret This Decision?" with Aliza Olive, MD
Caregivers of children living with serious medical conditions face a myriad of decisions on behalf of their child, ranging from medical interventions - such as feeding tubes, tracheostomy, clinical trials - to out-of-home residential placement. With these decisions comes a tremendous sense of responsibility and a sometimes overwhelming fear of regret.
This event featured Dr. Aliza Olive (Cleveland Clinic) who discussed the emotional landscape of complex decision-making and highlighted supports that can be put in place to help caregivers mitigate fears and lessen the likelihood of decisional regret.
This event featured Dr. Aliza Olive (Cleveland Clinic) who discussed the emotional landscape of complex decision-making and highlighted supports that can be put in place to help caregivers mitigate fears and lessen the likelihood of decisional regret.
Переглядів: 165
Відео
There was a lot of veiled language_Shorter
Переглядів 442 місяці тому
There was a lot of veiled language_Shorter
Two Tools for Providers of Children with Severe Neurological Impairment
Переглядів 643 місяці тому
This event is designed for providers to get to know 2 resources - NeuroJourney and the Family Support Program by Child Neurology Foundation - available to you as you care for children with severe neurological impairment (SNI).
CPN's In the Room Talk with Author and Mother Jessica Fein, author of Breath Taking
Переглядів 943 місяці тому
A conversation between CPN's Jennifer Siedman and mom and author Jessica Fein, author of Breath Taking: A Memoir of Family, Dreams and Broken Genes. The connection between these two women and their experience - and the examples Jessica gives from her years of parenting Dahlia and her other children - makes for a very rich discussion. It could have gone on for two hours! The book is excellent.
CPN In the Room Discover the Power of Children’s Books to Help Young People Understand Death & Loss
Переглядів 844 місяці тому
Children’s literature can offer a gentle and developmentally appropriate way to address complex topics - such as death and grief - with children. Through narrative frameworks, imagery, and relatable characters, children can better understand the natural cycle of life and how to cope with difficult emotions. Reading books with trusted adults can facilitate conversation and strengthen relationshi...
The mother of a medically complex child’s advice to clinicians: Don’t call me ‘mom’ … Don’t ask my q
Переглядів 3094 місяці тому
The mother of a medically complex child’s advice to clinicians: Don’t call me ‘mom’ … Don’t ask my q
I knew he wasn’t going to be the exception. I had to connect the dots. No one else did that for me.
Переглядів 1774 місяці тому
A Rare Diagnosis: “I knew he wasn’t going to be the exception . . . I had to connect the dots. No one else did that for me. But then on the backside, clinicians said, I would have made the same decision.”
CPN's In The Room: Book Talk with Myra Sack - Fifty-Seven Fridays
Переглядів 2144 місяці тому
A recording of Blyth Lord/CPN's conversation with mom and author Myra Sack. Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way. This memoir honors Myra’s daughter Havi and chronicles their journey helping her live and die. We’ll explore: Diagnostic odyssey and first year “blur” Leaning into pain and love, simultaneously, and how “Shabbirthdays” came to embody the unity of opposites Heali...
CPN's In the Room: Do you want to work? Do you have to work? How do you caregive and work?
Переглядів 1785 місяців тому
This event explored the many challenges and rewards that parents find as they consider their options and adjust accordingly.
NICU bedside nurses take the brunt of a lot things Watching babies suffer is always a challenge
Переглядів 1295 місяців тому
Fran McCarthy, MS, RNC-NIC,CPLC describes how she supports early career bedside nurses in the NICU who are learning how to handle all the emotions: the family’s and their own.
Perinatal palliative care: What does the miracle look like?
Переглядів 775 місяців тому
Fran McCarthy, MS, RNC-NIC,CPLC describes how she explores what a miracle may be to parents and helping them see the miracle they’re already in.
Our role at the bedside is to partner with the family and also face the reality in front of us.
Переглядів 465 місяців тому
Fran McCarthy, MS, RNC-NIC,CPLC frames how perinatal palliative care providers can - or rather should - both ally with the family and their wishes while also not offering unfair hope or expectations.
Perinatal palliative care: The language used with families is so important
Переглядів 715 місяців тому
Fran McCarthy, MS, RNC-NIC,CPLC notes medical terminology that should not be used with families.
Perinatal palliative care: It is possible to do intensive care and palliative care simultaneously.
Переглядів 575 місяців тому
Fran McCarthy, MS, RNC-NIC,CPLC stresses that intensive care and palliative care can be concurrent, especially in the NICU when the family is working for time and getting the baby home. She also notes how important it is to help moms hold their babies even when they are so fragile.
Medical complexity:The importance of setting families' expectations for the load of home care
Переглядів 565 місяців тому
Complex care pediatrician Dr. Elaine Lin names how important it is to stress to families that just because you made a referral to home nursing doesn't mean quality home nursing will be available; and that families need to be prepared to care for their child themselves before discharge. "I think it's so critical to, again, make sure families, especially if they are going home the first time real...
The crisis of Medicaid variability across states and the homecare nursing shortage in pediatrics.
Переглядів 575 місяців тому
The crisis of Medicaid variability across states and the homecare nursing shortage in pediatrics.
Do parents ever say, “I didn’t realize how hard caring for my child at home was going to be”?
Переглядів 1545 місяців тому
Do parents ever say, “I didn’t realize how hard caring for my child at home was going to be”?
Caring for medically complex children at home: Helping parents know which things are most critical
Переглядів 405 місяців тому
Caring for medically complex children at home: Helping parents know which things are most critical
Keeping the rotation of homecare nurses current with medical orders
Переглядів 275 місяців тому
Keeping the rotation of homecare nurses current with medical orders
A complex care doctor on the value of seeing the child in their home environment.
Переглядів 695 місяців тому
A complex care doctor on the value of seeing the child in their home environment.
CPN's In The Room: Caregivers, Get Acquainted With NeuroJourney
Переглядів 686 місяців тому
CPN's In The Room: Caregivers, Get Acquainted With NeuroJourney
Un pediatra paliativista: El cuidadado paleativo no es ciodado de hospicio o de final de vida .
Переглядів 366 місяців тому
Un pediatra paliativista: El cuidadado paleativo no es ciodado de hospicio o de final de vida .
Un pediatra paliativista: Cuando el lenguage o la cultura son una barrera
Переглядів 346 місяців тому
Un pediatra paliativista: Cuando el lenguage o la cultura son una barrera
Un pediatra explica el cuidado paleativo pediátrico
Переглядів 446 місяців тому
Un pediatra explica el cuidado paleativo pediátrico
Perinatal palliative care: End of Life is part of the Neonatalogy terrain
Переглядів 536 місяців тому
Perinatal palliative care: End of Life is part of the Neonatalogy terrain
Parent Champion Amy Graver, mother of Lauren.
Переглядів 1046 місяців тому
Parent Champion Amy Graver, mother of Lauren.
Decision making over 14 months: Our goal was always for her to feel loved and be out of the hospital
Переглядів 3496 місяців тому
Decision making over 14 months: Our goal was always for her to feel loved and be out of the hospital
“Advice to my past self at the 20 week ultrasound: It’s your decision at the end of the day.”
Переглядів 566 місяців тому
“Advice to my past self at the 20 week ultrasound: It’s your decision at the end of the day.”
English not so good. Is baby retarded?
I disagree. I feel that the more I know, the better equipped I am to help and to understand. I've done this all my life, with a few family tragedies. My husband was diagnosed with cardiomyopathy at 50. I read everything I could find about the progression. I was, at least somewhat, prepared. I think this doctor is under estimating what people are capable of. I realize that my husband wasn't my child but who can truly know how each individual experience feels. I also went through the same fear when both my twin sons were diagnosed with lymphoma. Blessedly, both are considered "cured". But here again, knowledge is empowering.
My unborn was just diagnosed with this two days ago..
❤
I lost my 24 year old son 27 years ago to Leukemia. I eventually became a Hospice nurse because of that. The death of a child is always a sad and devastating thing no matter the age, because you never expect that your child will die before you do. For me it was a mixed blessing because my son was very ill and suffered greatly for 2 years before he passed . He told me that he wanted to die, so when it happened it was almost a relief ,because he was no longer suffering.
@@AS-yz2izThank you so much. You have my condolences as well.
I'm so sorry 😢😢 I'm a patient.. but i think about my kids
You should have had an abortion.
You should have never gotten pregnant or had an abortion.
yes Amen. Jesus has given these little kids their gardian angels to protect them in their younger days, especially during a very difficult time.
ممكن pdf
You felt his soul leave and go be with the Lord.
This is what happens when parents don't get tested. We jews are tested automatically for this since it predominantly hits us but it can hit anyone
Here's a question if you're Jewish and you're husband is Jewish why did u have kids when u knew u were carriers and put your kid through this? Don't say u didn't know..I'm Jewish I know you knew especially if you're ashkenazi u were automatically tested..we all are. rabbis won't marry us without it
Amazing parents
Thank you for sharing your story. 🌲🙏🏻❤️✨🙏🏻❤️
Can someone please get with me and help me save my granddaughter with Trisomy18???
Next time get tested to see if you're carriers. Gentiles normally don't though herein lies the problem
This is tay sachs. And if you are Jewish particularly ashkenazi decent u r supposed to be automatically tested and if not u should know to be tested since we are the ones that usually get this. However if you aren't Jewish u should be tested anyway and if u don't u can't complain about this happening even though it's very rare
ua-cam.com/video/KeUQxyyTSp0/v-deo.html for help with GM1
It's something about a child suffering that i can't emotionally handle. Im totally emotionless with 98 percent of other situations regarding death but when a child dies, it hits me like a ton of bricks
Given that most of us would submit ourselves to eternal torture for our kids if required, I think facing the loss of a child would feel worse than eternal torture
I hope these souls are doing well today.
ASEDNKYBUGCHJUKYOUVHYÑJDQ
GOD BLESS YOU....
Can u contact me 7542187369 my kids have the same disease I DNT Know wat to do
Bone marrow transplant.
They will die in this point+ the Bone marrow transplant is for who the symptoms didn’t show yet because it just stop the leukodystrophy from effecting on the child...
I’ve never experienced Tay Sachs in any contact, but I wanted this mother and family to know that these videos have completely opened and touched my heart to this disease. Thank you.
Thank you Chloe, for taking the time to send us this message. We will let Kate know.
Good job! Keep it up!