Courageous Parents Network
Courageous Parents Network
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  • Просмотров 1 354 679
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.
Просмотров: 104

Видео

There was a lot of veiled language_Shorter
Просмотров 2014 дней назад
There was a lot of veiled language_Shorter
Two Tools for Providers of Children with Severe Neurological Impairment
Просмотров 58Месяц назад
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
Просмотров 74Месяц назад
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
Просмотров 842 месяца назад
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
Просмотров 2272 месяца назад
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.
Просмотров 1492 месяца назад
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
Просмотров 1862 месяца назад
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?
Просмотров 1513 месяца назад
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
Просмотров 1173 месяца назад
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?
Просмотров 583 месяца назад
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.
Просмотров 363 месяца назад
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
Просмотров 673 месяца назад
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.
Просмотров 503 месяца назад
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
Просмотров 383 месяца назад
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.
Просмотров 503 месяца назад
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”?
Просмотров 1243 месяца назад
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
Просмотров 373 месяца назад
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
Просмотров 243 месяца назад
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.
Просмотров 603 месяца назад
A complex care doctor on the value of seeing the child in their home environment.
Learn About NeuroJourney
Просмотров 633 месяца назад
Learn About NeuroJourney
CPN's In The Room: Caregivers, Get Acquainted With NeuroJourney
Просмотров 674 месяца назад
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 .
Просмотров 354 месяца назад
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
Просмотров 344 месяца назад
Un pediatra paliativista: Cuando el lenguage o la cultura son una barrera
Un pediatra explica el cuidado paleativo pediátrico
Просмотров 434 месяца назад
Un pediatra explica el cuidado paleativo pediátrico
Perinatal palliative care: End of Life is part of the Neonatalogy terrain
Просмотров 474 месяца назад
Perinatal palliative care: End of Life is part of the Neonatalogy terrain
Parent Champion Amy Graver, mother of Lauren.
Просмотров 944 месяца назад
Parent Champion Amy Graver, mother of Lauren.
Introducing NeuroJourney 2024
Просмотров 2544 месяца назад
Introducing NeuroJourney 2024
Decision making over 14 months: Our goal was always for her to feel loved and be out of the hospital
Просмотров 3334 месяца назад
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.”
Просмотров 524 месяца назад
“Advice to my past self at the 20 week ultrasound: It’s your decision at the end of the day.”

Комментарии

  • @alisonscofield6653
    @alisonscofield6653 Месяц назад

    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.

  • @jessicaknight4670
    @jessicaknight4670 3 месяца назад

    My unborn was just diagnosed with this two days ago..

  • @jessicaknight4670
    @jessicaknight4670 3 месяца назад

  • @ellenosceola5707
    @ellenosceola5707 7 месяцев назад

    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-yz2iz
      @AS-yz2iz 6 месяцев назад

      I'm so sorry. Our 19 year old son had leukemia. It's not easy seeing your child suffer. I'm sorry for your loss.

    • @ellenosceola5707
      @ellenosceola5707 6 месяцев назад

    • @ellenosceola5707
      @ellenosceola5707 6 месяцев назад

      ⁠@@AS-yz2izThank you so much. You have my condolences as well.

  • @rawlivingwithdisabilities
    @rawlivingwithdisabilities 9 месяцев назад

    I'm so sorry 😢😢 I'm a patient.. but i think about my kids

  • @allieshepard7791
    @allieshepard7791 Год назад

    You should have had an abortion.

  • @allieshepard7791
    @allieshepard7791 Год назад

    You should have never gotten pregnant or had an abortion.

  • @AnAn-wp5rk
    @AnAn-wp5rk Год назад

    yes Amen. Jesus has given these little kids their gardian angels to protect them in their younger days, especially during a very difficult time.

  • @wasanjumma1176
    @wasanjumma1176 Год назад

    ممكن pdf

  • @kimberlyevans1274
    @kimberlyevans1274 Год назад

    You felt his soul leave and go be with the Lord.

  • @chanabayla1823
    @chanabayla1823 Год назад

    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

  • @chanabayla1823
    @chanabayla1823 Год назад

    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

  • @demonic_dancer2569
    @demonic_dancer2569 2 года назад

    Amazing parents

  • @gollbach-cardenas5605
    @gollbach-cardenas5605 2 года назад

    Thank you for sharing your story. 🌲🙏🏻❤️✨🙏🏻❤️

  • @nancymcleveland115
    @nancymcleveland115 2 года назад

    Can someone please get with me and help me save my granddaughter with Trisomy18???

  • @chanabayla1823
    @chanabayla1823 2 года назад

    Next time get tested to see if you're carriers. Gentiles normally don't though herein lies the problem

  • @chanabayla1823
    @chanabayla1823 2 года назад

    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

  • @teebee9052
    @teebee9052 2 года назад

    ruclips.net/video/KeUQxyyTSp0/видео.html for help with GM1

  • @clintonmorgan5627
    @clintonmorgan5627 2 года назад

    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

  • @boltzmannbrain8698
    @boltzmannbrain8698 2 года назад

    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

  • @NikkiSchumacherOfficial
    @NikkiSchumacherOfficial 2 года назад

    I hope these souls are doing well today.

  • @asedygmkuoutgedunbhgye5633
    @asedygmkuoutgedunbhgye5633 3 года назад

    ASEDNKYBUGCHJUKYOUVHYÑJDQ

  • @dolocapo5430
    @dolocapo5430 3 года назад

    GOD BLESS YOU....

  • @KyngStepa
    @KyngStepa 3 года назад

    Can u contact me 7542187369 my kids have the same disease I DNT Know wat to do

  • @nicolewalker3276
    @nicolewalker3276 4 года назад

    Bone marrow transplant.

    • @doodaall706
      @doodaall706 3 года назад

      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...

  • @Chloe-zs8ee
    @Chloe-zs8ee 5 лет назад

    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.

    • @courageousparentsnetwork
      @courageousparentsnetwork 5 лет назад

      Thank you Chloe, for taking the time to send us this message. We will let Kate know.

  • @youtubeespana6143
    @youtubeespana6143 8 лет назад

    Good job! Keep it up!