TRNT1 Dad
TRNT1 Dad
  • 52
  • 82 348
Jimmy Health Update December 20th, 2024. Jimmy got his PASSY VALVE!
#nicufamily #progress #ventilator
linktr.ee/handfamily
Jimmy is doing really well and we are so happy with all the news we got from his last outpatient appointments! Plus a HUGE update is he got his Passy Valve, stick around to the end of the video to see him with it for the first time.
Jimmy was born with a RARE genetic disorder/mutation of the TRNT1 gene. It's so rare it doesn't even have a name. This genetic mutation is a metabolic mutation that can effect him in a variety of ways from what we know. Anemia, developmental delays, immunology, and cardiomyopathy are just some of the potential risks. I'm hoping to keep track of his story and hopefully creat a platform for people who MAY have a child with the same genetic disorder. I know that number is most likely small seeing how rare his disorder is but even if you'd like to stick around just to follow his story, or to feel a sense of belonging if you also have another rare genetic mutation.
Find us on all social platforms @trnt1dad
If you would like to donate to Jimmy you can do that here: gofund.me/3b660a2d
(00:00) - Intro
(00:20) - Kidneys
(01:06) - Calcium
(01:22) - Thyroid
(01:47) - Hemoglobin
(02:01) - NEW RECORD
(02:29) - New Podcast
(03:22) - Passy Valve
Переглядів: 379

Відео

Medically Dadicated Ep. 1: Conversations with NICU/Medically Complex Dad Dave Dickerson
Переглядів 38719 годин тому
#Noonan #nicufamily #geneticdisorders Join us in this heartwarming episode of "Medically Dadicated," where we dive into the inspiring journey of Dave Dickerson, a dedicated father of a medically complex child. Dave shares his powerful story of advocating for his NICU baby and the challenges he faced along the way. This conversation sheds light on NICU parent advocacy, providing valuable insight...
What is PEEP, PIP, & Pressure Support? - Ventilator Terminology
Переглядів 100День тому
#trachea #ventilator #terminologies linktr.ee/handfamily In this video, I break down the essential concepts of PEEP, PIP, and Pressure Support and explain their significance in ventilator settings. Learn what these terms mean, how they interact with the ventilator, and their impact on your child or patient’s care. Stay tuned for a visual example at the end that illustrates these concepts clearl...
How to Prepare for a Multi Day Journey with Your Medically Complex Child
Переглядів 29514 днів тому
#medical #tracheostomy #travel Planning a Multi-Day Trip with a Medically Complex Child: Essential Preparation Guide" Embarking on a multi-day trip with a medically complex child requires meticulous planning and foresight. This guide will help you navigate the essential steps to ensure a safe, enjoyable, and stress-free journey for your family. Key Preparation Steps: Medical Essentials Packing:...
How to Change Out the Circuit for your Home Ventilator!
Переглядів 529Місяць тому
#circuitchange #trach #ventilator We have a son who is on a trach and a ventilator at night. We have to change out his circuit once every week. It's not that hard but it can be particular and you will have to know how to do this if you are a parent or caretaker for someone who uses a ventilator. This is a video that I made showing you step by step all the things that we need to do to change out...
Jimmy to the ER
Переглядів 1,2 тис.2 місяці тому
Jimmy to the ER
Watch Jimmy's Emergency Trach Change - Front Yard Ring Camera Footage of a VERY SCARY Moment
Переглядів 2812 місяці тому
Watch Jimmy's Emergency Trach Change - Front Yard Ring Camera Footage of a VERY SCARY Moment
Jimmy Update October 15th 2024
Переглядів 4,8 тис.2 місяці тому
Jimmy Update October 15th 2024
Babytrend Expedition vs Navigator: 2 in 1 Wagon Battle!
Переглядів 3,8 тис.4 місяці тому
Babytrend Expedition vs Navigator: 2 in 1 Wagon Battle!
Jimmy update from 1/23/24
Переглядів 27810 місяців тому
Jimmy update from 1/23/24
Attendant Care Program CRISIS for Indiana
Переглядів 16211 місяців тому
Attendant Care Program CRISIS for Indiana
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Переглядів 56911 місяців тому
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Leukoencephalopathy Update
Переглядів 44911 місяців тому
Leukoencephalopathy Update
Let’s talk about $$$ and NICU / PICU life.
Переглядів 251Рік тому
Let’s talk about $$$ and NICU / PICU life.
Dear God
Переглядів 254Рік тому
Dear God
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Переглядів 624Рік тому
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Updating on Jimmy's Journey: A Week Later
Переглядів 611Рік тому
Updating on Jimmy's Journey: A Week Later
Jimmy's Birth Story, This Wasn't an Easy One To Create
Переглядів 46 тис.Рік тому
Jimmy's Birth Story, This Wasn't an Easy One To Create

КОМЕНТАРІ

  • @rijtlp2
    @rijtlp2 14 годин тому

    Bless that Family ❤

    • @TRNT1Dad
      @TRNT1Dad 13 годин тому

      Thank you so much 😊

  • @susanhabkirk2689
    @susanhabkirk2689 День тому

    I hope you post often even if it's not really long but it is a good place to vent when God's busy with someone

    • @TRNT1Dad
      @TRNT1Dad 21 годину тому

      I love to use UA-cam as almost a journal. I started with TikTok but the short form is less in depth. And as a videographer I much prefer horizontal video haha

  • @janetphillips199
    @janetphillips199 2 дні тому

    He's beautiful ❤

    • @TRNT1Dad
      @TRNT1Dad День тому

      Thank you so much 😊

  • @bunnykeedy8983
    @bunnykeedy8983 2 дні тому

    Bless you all. Little Jimmy is so sweet! With God, all things are possible!

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Amen! Thank you so so much!

  • @deblawrence8341
    @deblawrence8341 2 дні тому

    What a darling, strong little guy he is! 🥰

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      He’s such a strong little warrior. He’s my hero !

  • @spiralrose
    @spiralrose 2 дні тому

    The most poignant quote I ever read about parenthood goes something like this: “How hard it is that we are given these precious, helpless little beings to protect and raise into happy, healthy people….while still only being human ourselves.” We’re all human, we’re all going to make mistakes, screw up, etc. I’m sorry this happened, and I’m really glad that lil man pulled through. Please don’t be too hard on yourself.

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      🥹 this is probably my favorite comment so far. Thank you so much for this!

  • @ShyannFerguson-ig7qj
    @ShyannFerguson-ig7qj 3 дні тому

    Do you have to have a certain kind of car seat for the car seat attachment? Or can you use any kind of infant car seat with the attachment?

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Any kind of infant car seat will work :) you just set it on top of

  • @KeriPost
    @KeriPost 3 дні тому

    What a sweet baby boy you were blessed with. I have a son (now 27) who was born with only half of his heart. It is amazing what medicine can do now. I know God gave you Jimmy for a reason and all any of us can do is take life one day at a time! Enjoy him! Only God knows what the future holds!❤

    • @TRNT1Dad
      @TRNT1Dad 3 дні тому

      @@KeriPost what an amazing story!!!! I would love to hear more about that :)

  • @AliJaeJR
    @AliJaeJR 3 дні тому

    So sorry for the worst news a parent can hear, what a way to begin life. So happy to hear he's doing so much better. I try to think when Drs share bad news...they are my on earth message for possibly realty voice...but they are by no means the final voice. God is answering prayers non stop and he hears all prayers and cries and voices... He is our Almighty God!!! God I pray you watch over all of our children they all need you so much. Please speak to us when we have an action to make so we can fulfill your meaning for us.

    • @TRNT1Dad
      @TRNT1Dad 3 дні тому

      @@AliJaeJR this is so well put! We have always followed the model of giving God room to work in Jimmy’s life and boy has he!!! ❤️

  • @cherylcasey4937
    @cherylcasey4937 4 дні тому

    Prayers to you and your family. You do what you feel is right for your family .Don't let others judge'. Also Merry Christmas and a wonderful New Year to you and yours!!!

    • @TRNT1Dad
      @TRNT1Dad 4 дні тому

      Merry Christmas to you and your family!!!

  • @beckykent6674
    @beckykent6674 4 дні тому

    I'm so happy for you, but is he going to have a good quality of life? He is going through all these blood draws and tests. I just wonder where all this will lead and if it will be worth it for your son. Prayers to your family.

    • @TRNT1Dad
      @TRNT1Dad 4 дні тому

      Hi Becky, thanks for the comment. Every decision we ever make is fueled by the phrase "Just do the next right thing for Jimmy". This includes making the right decisions for his long term health. Jimmy had a Leukoencephalopathy scare a while back, and when we were given that news we were prepared to let him pass if the guaranteed outcome was a slow death. Turned out that was an incorrect diagnosis and we were so blessed for that. I say that to provide a window of clarity on our mindset, when push comes to shove if God made it abundantly clear that it was Jimmy's time to go and his future is a poor quality of life, we will act accordingly. However, currently he is only slightly delayed and we are getting on LESS meds and having to do LESS intervention for him. He can FULLY grow out of the things he is dealing with and with the right support he could live a relatively normal life so we are not taking that out of his or God's hands. Final piece that I will say is that this crying in the video is very uncommon for Jimmy. He is SUCH a happy soul and is filled with Joy 99.99% of the time. He is progressing and living a great life out of the hospital now. We are his parents, but he is God's child first, and who are we to decide what is "worth it" for Jimmy. Hopefully this comment did not come off rude in any way, I truly do appreciate your comment and I hope that I was able to adequately share our perspective.

    • @spiralrose
      @spiralrose 2 дні тому

      Dear TRNT1 Dad, I want to take a moment to thank you for your insightful and compassionate response to the question asked by the above commenter. We come to you as outsiders who (generally) have little medical knowledge and certainly no experience with what your little boy and family are contending with. Sometimes someone’s question might feel invasive and some parents would get defensive when their choices for the present or future are questioned….and who can blame them? Thank you for answering with such grace, and openness and allowing us on the outside to learn along with you. The sacrifice you make in terms of some level of privacy will help spread an understanding of your beautiful boy’s condition and hopefully reach someone going through something similar. Thank you for answering our questions with compassion. Sending high hopes and thoughts for your family! Have a merry Christmas!

  • @courtneyfan9
    @courtneyfan9 7 днів тому

    I was born in July 1997. My Mom had a Amio at around 30 weeks along. They detected my birth defect via ultrasound but told my parents if the Amio came back positive for any genetic conditions they would not do any interventions after I was born. The testing came back negative for any genetic conditions.

    • @TRNT1Dad
      @TRNT1Dad 7 днів тому

      @@courtneyfan9 thank you for sharing! So cool that they are able to accurately predict so many things before a baby even is born.

  • @senjahawks857
    @senjahawks857 7 днів тому

    I really believe your touch is what brought up his numbers.

    • @TRNT1Dad
      @TRNT1Dad 7 днів тому

      It was probably the first gentle touch he had ever experienced 🥰

  • @melodymacken9788
    @melodymacken9788 12 днів тому

    God's blessings to you all.

    • @TRNT1Dad
      @TRNT1Dad 12 днів тому

      @@melodymacken9788 thank you so much 🙏🏻

  • @minimaker5600
    @minimaker5600 13 днів тому

    The next birthday my son will have is his 60th. Modern medicine and wonderful doctors saved him when he was born with several heart defects, though not as serious as your little Jimmy. I wish that you will have the same future for yours.

    • @TRNT1Dad
      @TRNT1Dad 12 днів тому

      Thank you so much for this story of success! These moments give us so much hope for Jimmy’s future 🙌🏻

  • @judypanozzo299
    @judypanozzo299 13 днів тому

    When my son was born he was given 6 months to live. Over the years dr's have told me to be prepared, that he wasn't going to make it a least 6 times. His brother is a dr and told his dad "they don't know what's going to happen to him-he writes his on book". My son is 51 years old and the healthiest he has ever been. Never give up. God has a purpose for everything.

    • @TRNT1Dad
      @TRNT1Dad 12 днів тому

      THIS!! We have been told the same countless times and we are so blessed to have him. Never gave up and never plan on it. So happy to hear about your sons amazing story ❤️

  • @9384cows
    @9384cows 14 днів тому

    Sending tons of Love and Prayers to you and your precious son.🙏💙🙏👣🙏💙🙏💙👣💙

    • @TRNT1Dad
      @TRNT1Dad 13 днів тому

      Amen, thank you so much! 🙏🏻🙏🏻

  • @htq118
    @htq118 14 днів тому

    Great review! Thank you!!! Time to convince my husband to get the navigator for the kids!

    • @TRNT1Dad
      @TRNT1Dad 14 днів тому

      This video should help with that :) It’s honestly so great to have! Especially for bigger day trips.

  • @Arlene-i9r
    @Arlene-i9r 19 днів тому

    Sounds like you two are heading for burnout. Take a lil rest even for just a day. God bless you abundantly.

    • @TRNT1Dad
      @TRNT1Dad 18 днів тому

      We got away for our anniversary, it was much needed.

  • @nursehoney24
    @nursehoney24 19 днів тому

    Fantastic video ❤ I wish more videos like this was on UA-cam, I guarantee you, somewhere, there’s a special needs mama & daddy, that this video truly helped. Ideas you guys shared on preparing a trip with circumstances like you guys, are just fantastic. God bless 🙏🙏 You all have a beautiful, precious family ❤ Thanks for sharing

    • @TRNT1Dad
      @TRNT1Dad 19 днів тому

      That is 100% our goal, to share our story and in doing so help a family like ours, even just one. It makes it all worth it.

  • @courtneyfan9
    @courtneyfan9 20 днів тому

    I had to laugh at the “Hates Naps” part. I am a 27 year old former NICU warrior and I dislike sleeping lol

    • @TRNT1Dad
      @TRNT1Dad 20 днів тому

      @@courtneyfan9 there’s gotta be some correlation 🤣 he still dislikes falling asleep haha

  • @franny5295
    @franny5295 21 день тому

    All of you did good. Edited to add: Yeah, EMS rides ready to throw hands with death when it comes to kids. I'm glad everything turned out ok.

    • @TRNT1Dad
      @TRNT1Dad 20 днів тому

      Thank you so much!

  • @ninademci1500
    @ninademci1500 23 дні тому

    He’s a cutie. Despite all of his medical problems, he looks great and most babies I know have a favorite something - stuffed animal, binky, blanket, etc. Some of them don’t like naps, laying down for a diaper change, or being put into a car seat. Will you please keep us posted about Jimmy? Thanks.h

    • @TRNT1Dad
      @TRNT1Dad 22 дні тому

      @@ninademci1500 absolutely!!!

  • @maryrichmond
    @maryrichmond 23 дні тому

    Jimmy is such a beautiful and precious gift. Thank you for sharing your story. Subscribed to follow you journey. ❤

    • @TRNT1Dad
      @TRNT1Dad 23 дні тому

      Thank you so much!

  • @nyetgale
    @nyetgale 25 днів тому

    Even just the concept of charging people for necessary medical care in a first world country is barbaric! I am glad your church family have been so supportive. Grateful God provides.

    • @TRNT1Dad
      @TRNT1Dad 25 днів тому

      @@nyetgale I 100% agree!!!

  • @DeniseFiegel
    @DeniseFiegel 26 днів тому

    Pretty baby love him god bless your family

    • @TRNT1Dad
      @TRNT1Dad 25 днів тому

      @@DeniseFiegel thank you Denise

  • @marysalazar2870
    @marysalazar2870 26 днів тому

    Praying for healing for this precious baby boy.

  • @patriciawilliamsn9605
    @patriciawilliamsn9605 27 днів тому

    God has been with in this journey. Jimmy is adorable

    • @TRNT1Dad
      @TRNT1Dad 26 днів тому

      @@patriciawilliamsn9605 absolutely no doubt about it 🙏🏻

  • @Jess_lightining
    @Jess_lightining 27 днів тому

    😊

  • @Jdjustsaying
    @Jdjustsaying 27 днів тому

    Medical expenses need to be covered by the government in civilised societies. Period.

    • @TRNT1Dad
      @TRNT1Dad 27 днів тому

      @@Jdjustsaying agreed!!!

  • @Jdjustsaying
    @Jdjustsaying 27 днів тому

    I watched the birth video but I can’t remember what syndrome he has? Can anyone tell me? Thanks ❤

    • @TRNT1Dad
      @TRNT1Dad 27 днів тому

      @@Jdjustsaying it’s a gene mutation. TRNT1 is the gene that is mutated

  • @liveiria
    @liveiria 27 днів тому

    Omg he’s a miracle and so beautiful

    • @TRNT1Dad
      @TRNT1Dad 20 днів тому

      He truly is, this kid is amazing 🤩

  • @deborahlees6541
    @deborahlees6541 27 днів тому

    Bless this little guy and his family. ❤💖💕

  • @spiritthingw
    @spiritthingw 27 днів тому

    I just found your story today, I binged watching it all day today, your family is beautiful and I know there must be so many ups and downs but watching you grow in your faith and the love and care you bring to every member of your family. You are there for Jimmy every single day, no matter what. Your all in my thoughts and prayers and thank you for sharing it all with us. God bless❤

    • @TRNT1Dad
      @TRNT1Dad 27 днів тому

      @@spiritthingw thank you so so much. We really are blessed and I am so happy that the love for my family shows through the videos. We have had ups and downs but Jimmy has taught us all so much and faith growing through this is an exact correct statement. Thank you for following along the journey 🙌🏻❤️

  • @spiritthingw
    @spiritthingw 27 днів тому

  • @susannechickenmom5621
    @susannechickenmom5621 27 днів тому

    ❤🙏

  • @wendyschutze2818
    @wendyschutze2818 27 днів тому

    I am an Ex NICU RN and Midwife. God was with Jimmy, you and your wife, along with the hundreds of people who cared for him. I am so glad you have your little man at home. I pray he is with you for a long time. You have been blessed.

    • @TRNT1Dad
      @TRNT1Dad 26 днів тому

      @@wendyschutze2818 amen! Thank you for all you’ve done, truly a hero 🦸

  • @dlinsk401
    @dlinsk401 27 днів тому

    Love the hair! ❤

  • @dlinsk401
    @dlinsk401 27 днів тому

    🍀❤️🙏🏻❤️🍀

  • @mististallard
    @mististallard 28 днів тому

    What a beautiful miracle you have there. God truly is so good. ❤

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      He truly is! God does truly amazing things!

  • @genericname9024
    @genericname9024 28 днів тому

    What a lucky baby, not just for being a little miracle, but for having such incredible parents who loved him SO SO much before he was ever even born.

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      We truly did 🥰 he’s our little miracle 🙌🏻

  • @BisquickTheBaboon
    @BisquickTheBaboon 28 днів тому

    Omg he's so cute!!!! Congratulations on your beautiful son

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Thank you so much!

  • @MrsSherrymcm
    @MrsSherrymcm 28 днів тому

    God bless your precious son, Always ❤🙏🏻

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Amen 🙏🏻 thank you!

  • @PattyNewport-cl3uv
    @PattyNewport-cl3uv 28 днів тому

    ❤❤❤

  • @myrnamiranda4997
    @myrnamiranda4997 28 днів тому

    The doctors at Laurie's Childrens Hosp. saved my grandson's life. He was born with Neuroblastoma. Had surgery when he was a one year old baby. He will be 10 years old soon. God is good!

    • @AshleyBurrus
      @AshleyBurrus 27 днів тому

      My daughter was diagnosed at 13 months after being born 6 weeks early. They think she had it for a while before diagnosis because it was stage 3. She fortunately beat hers too and is now 8 1/2 years old!

    • @Arlene-i9r
      @Arlene-i9r 19 днів тому

      God is great. Bless you warriors

    • @edwinagolombek3253
      @edwinagolombek3253 9 днів тому

      it's actually science rather than some imaginary thing..​@@Arlene-i9r

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      They are so great there! Thank you so much for sharing your story ❤️

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Amen!!! 🙏🏻 little miracles walking all around us!

  • @brendapyron459
    @brendapyron459 28 днів тому

    God bless you all. Get well Jimmy. ❤

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Thank you! He’s doing so well!

  • @DiannaWalters-h8p
    @DiannaWalters-h8p 28 днів тому

    God,still working miracles, praise God 🙏🙏🙏🙏

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Always! We are so BLESSED

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Amen!!! 🙏🏻

  • @squeeerle
    @squeeerle 28 днів тому

    Jimmy's excitement is so cute. Wishing all good health!

    • @TRNT1Dad
      @TRNT1Dad 27 днів тому

      @@squeeerle amen 🙏🏻 thank you!!! He’s doing really well. :)

  • @MadeleineJohnston-yr9yy
    @MadeleineJohnston-yr9yy 28 днів тому

    ALMIGHTY GOD BLESS AND HAVE GREAT MERCY ON YOU AND YOURS ALWAYS, IN THE PRECIOUS NAME OF JESUS CHRIST, OUR LORD AND SAVIOUR, AMEN ♥️

    • @TRNT1Dad
      @TRNT1Dad 2 дні тому

      Amen! 🙏🏻 thank you so much!

  • @sigridgariepy526
    @sigridgariepy526 28 днів тому

    Such a beautiful, precious, perfect baby 🤗

    • @TRNT1Dad
      @TRNT1Dad 28 днів тому

      @@sigridgariepy526 thank you so much 😊