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TRNT1 Dad
United States
Приєднався 17 бер 2023
Jimmy was Born on 1/5/23 with a rare genetic mutation of TRNT1. We don’t know much about it but we do know this, Jimmy is a fighter and he is going to give it his all every single day.
We are blessed to have him in our lives and can’t wait to see what God has in store for him.
If you are moved to donate in any way we do have a gofundme available: gofund.me/55eaf35c
We are blessed to have him in our lives and can’t wait to see what God has in store for him.
If you are moved to donate in any way we do have a gofundme available: gofund.me/55eaf35c
How to Change Out the Circuit for your Home Ventilator!
#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 this circuit. It is important to do this to keep the circuit from building up germs and other nasty things and to help keep you and or your child from getting sick. Please enjoy and don't be too critical if I missed something in the video or if you were told to do it a different way.
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) - Introduction
(00:44) - Why you're here
(02:02) - Our ventilator
(03:18) - What you will need
(03:59) - Remove Filter and Tubing
(04:15) - Unplug the cords
(06:00) - Remove the exhalation port
(06:10) - Remove the water chamber
(06:41) - Prep new water chamber
(07:13) - Replace Water Chamber
(08:35) - Replace Filter and Tubing
(10:03) - Replace the Plugs
(11:20) - Replace the Exhalation Port
(12:10) - Turn on the Ventilator and Heater
(12:43) - Exchange Ballard and Accordion Piece
(16:21) - Replace back Filter
(16:39) - Ending
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 this circuit. It is important to do this to keep the circuit from building up germs and other nasty things and to help keep you and or your child from getting sick. Please enjoy and don't be too critical if I missed something in the video or if you were told to do it a different way.
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) - Introduction
(00:44) - Why you're here
(02:02) - Our ventilator
(03:18) - What you will need
(03:59) - Remove Filter and Tubing
(04:15) - Unplug the cords
(06:00) - Remove the exhalation port
(06:10) - Remove the water chamber
(06:41) - Prep new water chamber
(07:13) - Replace Water Chamber
(08:35) - Replace Filter and Tubing
(10:03) - Replace the Plugs
(11:20) - Replace the Exhalation Port
(12:10) - Turn on the Ventilator and Heater
(12:43) - Exchange Ballard and Accordion Piece
(16:21) - Replace back Filter
(16:39) - Ending
Переглядів: 184
Відео
Jimmy to the ER
Переглядів 220Місяць тому
I give a lot of details in the video. Jimmy is back in the hospital and we are really struggling with this situation. Just a heads up I do ask for help in this video, which is hard for me. But here is the link if you feel inclined to help. gofund.me/f5feb50e
Life Saving Moment: The Realities of an Emergency Trach Change
Переглядів 142Місяць тому
#TrachCare #EmergencyTrachChange #BePrepared #SpecialNeedsParenting In this video, I share a personal experience of performing an emergency trach change on my son right in our front yard. It’s a reminder of how crucial it is to always be prepared for moments like this. I walk you through the importance of staying calm, being ready, and having the right tools on hand in case of an emergency. Wat...
Jimmy Update October 15th 2024
Переглядів 457Місяць тому
#geneticdisorder #nicubaby #newborn linktr.ee/handfamily We have been doing SO WELL! I'm excited to share this update because Jimmy is taking huge steps forward, including being home for an extended amount of time. Our family has been hit with a little bit of a new headache, but we will overcome with the help of GOD like always. Jimmy was born with a RARE genetic disorder/mutation of the TRNT1 ...
Babytrend Expedition vs Navigator: 2 in 1 Wagon Battle!
Переглядів 3,1 тис.3 місяці тому
#babytrend #wagon #strollers I was searching for a long time for a video that compared these two wagons and I couldn't find it...so I made it! I covered all the questions that me and my wife had when trying to decide between these two, and now I hope it helps someone else answer some questions they may have. Please be sure to follow along to learn more about Jimmy and his rare genetic disorder ...
Attendant Care Program CRISIS for Indiana
Переглядів 1129 місяців тому
Attendant Care Program CRISIS for Indiana
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Переглядів 33510 місяців тому
Fluid overload, hemodialysis, blood infection, ALL hitting hard.
Let’s talk about $$$ and NICU / PICU life.
Переглядів 99Рік тому
Let’s talk about $$$ and NICU / PICU life.
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Переглядів 265Рік тому
Meet Jimmy's Siblings! The TRNT1 Siblings Talking about Jimmy :)
Updating on Jimmy's Journey: A Week Later
Переглядів 428Рік тому
Updating on Jimmy's Journey: A Week Later
Jimmy's Birth Story, This Wasn't an Easy One To Create
Переглядів 4,2 тис.Рік тому
Jimmy's Birth Story, This Wasn't an Easy One To Create
Your daughter did such a great job. Siblings of special needs kids will take all of this and use it to impress our world. ❤️
You are a wonderful Dad. Even I as a retired nurse would be overwhelmed with what you guys have gone through. I am impressed with you. ❤️❤️❤️
@@laurelldockall2399 thank you so much 🙌🏻
You are a great Dad. Don’t be hard on yourself. I’m a retired RN and worked for years in the NICU. Your sweet Jimmy is a sweetest and I will pray for him. The Lord put him on this earth as he is. Perfect in every way. Thank you for sharing with us so we can focus our prayers. He is beautiful. Wish I could help you out. ❤️❤️❤️. I was a Healthcare administrator and I hate our US insurance. I am a Canadian and never saw all of this hardship back in the day. I wish I could help but retired early due to Stress and burnout. Things are so tight but I will share and pray. 🥰🥰🥰 5:21
May God put his angels around your family.
Jimmy is super cute and so is your family ❤ new subscriber ( my kids are grown and while I had a scare with my youngest daughter having to be in the icu it was only a few weeks) just showing support for your amazing family ❤
Great work guys! ❤❤❤
❤❤❤❤ 🙏🏻 🙏🏻🙏🏻🙏🏻🙏🏻
He's gorgeous 😍
Just happened upon your video, praying for your family,what a beautiful little guy 🙏💗
@@sallywalden8659 thank you so much!
Heyy! New subscriber! My daughter also has a trach and just recently came home with a vent. Have you heard of the new Vhome vents! They’ll be switching out all of the Phillips ones with that one!
I have not, that’s interesting! What area are you out of? Haven’t seen/heard of those yet here in Indiana, unless they’re hiding them from us haha
How do we do it?
What caused the mutation?
@@Duvmasta my wife and I are both carriers. So any child we have has a 25% chance of getting this
@ so it autosomal recessive then?
amazing vid! was just trying to decide btw the two.... what about weight? are they equally heavy?
May God bless you and your family
God bless ❤🤗
@@Trinikrys you as well 🙌🏻
Beautiful
Wow I didn’t even know about the Navigator! I have a 2yo & a 5yo. Do you happen to know the measurement for when the shade is up? I’m wondering if it is too short for her and her head will bump into it. In Florida that cover is crucial!
The food and him getting sick could be a total coincidence.
I was thinking the same thing, but we did blood work and all the tests. He didn't have any sickness. So it had to be something that caused it. Plus as soon as we stopped and switched to the other feeds, all the symptoms went away.
I am so sorry 🙏❤️🙏 Don’t be hard on yourself.
Thank you. I try not to be haha
Just got the Navigator. You expained well! Thanks for sharing your knowledge on these fine strollers.
Of course! Thank you for watching.
Very descriptive! You explained it very well! I was aiming for the navigator, and you basically convinced me! I love the canopy and I’m sold!
Love that I could be of help!
Thank you!
does the navigator canopies come off? i love that there is two and click into place. i have the expedition and cover doesnt even stay up unless nets are out
I have the navigation and you can take it completely out if you want. Its amazing
Yes you can :) it’s the best ever
I tried out the navigator at Target and loved how smooth it rode and sturdy it felt. But I liked the basket on the expedition but did not like the net sun shade. This review was so helpful to cement my choice! Especially finding out that the basket is interchangeable! Thank you for this awesome review!
It's honestly the best, glad that I could help you with the decision making process!
Excellent explanation!
This helped a lot. Going to exchanged my unopened expedition for the navigator. Thank you! 😊
Excellent choice!
Thank u for the comparison 😊😊
@@youssrasalhi112 you’re welcome
Thanks for this video :) We just got our navigator I like that it’s so easy to use and fold :)
It’s honestly the best!
Perfect explanations. That canopy is such a deal breaker but I need to get the car seat adapter anyway.
We felt the same way about the canopy
Thanks for the comparison! I was looking for a comparison and rhis was very helpful!
Perfect
Thank you
Thank you! Very helpful
Just the government destroying families and children even more😢
Not from Indiana, but this is definitely an important program, knowing how it impacts first hand, good luck ❤
Thank you so much!
Continued prayers 🙏❤️🙏
Thanks!
Added prayers for Jimmy and all of you!🙏🏻
Thank you!
Praying for Jimmy and your family
Thank you so much!
You are an encouragement to many people.
Thank you so much for the encouragement ❤️
We continue to pray as well. God bless you all.
I wish you guys the best ❤
7:10 🙏🏽❤️
In my prayers 🙏
Thank you for the prayers 🙏
My humble prayers for your baby Jimmy, for you, your wife and the family.
Thank you so much 🙌
Praying for your little miracle to continue thriving.
Thank you so much ❤️
What a gorgeous little boy❣️You can do this❣️
We fully believe that! God gave him to us for a reason 🥹
He's beautiful!!!!
Thanks, he’s got my good looks! Cause my wife still has hers 😂
I do not know anything about bone marrow transplants but I would like to say that I am a regular blood donor. I am O- and also something called CMV negative. Hard to explain but my blood can go to sick premature babies. I absolutely love hearing Jimmys story and knowing that my donations go to help someone like him! Many continued prayers.
Bone marrow transplant we have learned is more or less a last ditch effort. Very risky for someone in his case. That is amazing that you donate! You are truly saving lives like Jimmy ❤️
God Is so awesome ❤️ Praying for a full and complete recovery 💕🙏🏾💕
Thank you so much for the prayers 🙏❤️
Praying for Jimmy❤❤❤
Thank you so much for the prayers 🙏❤️