Hey there everyone!
We had a pretty good thanksgiving and have been having a really nice month of December! Just wanted to say thank you so much to everyone who has gifted my family from our Amazon wishlists! You all made a grown guy cry over how blessed I am this year.
For those who may not know our whole story. Bentley was born prematurely and spent his first 6 months of life in the NICU. He was discharged and home for 3 months before getting very sick with Human metapneumo virus and ended up in a critical unstable condition from January through September of this year. During that time he spent most of his time sedated and paralyzed and was trached on a ventilator. No one thought he was going to survive this ordeal, besides my wife and I (even then our faith was tested multiple times).
I came to this group to vent my frustrations and was welcomed with open arms. The love and support I and then my family received from this group and the prayers I strongly believe are what allowed us to persevere through this storm.
Now Bentley has been home since September 2 and while we have had some hiccups and some minor setbacks overall Bentley is thriving. He is rolling all over the place, his hand - eye coordination is absolutely amazing, he is super intelligent and is always solving puzzles (like figuring out how to get his ventilator circuit off or his trach tie pads off), he is finally starting to put things into his mouth and is getting familiar with different toys (he has a weird love for anything with tags).
Bentley is currently getting some burst steroids and some additional breathing treatments to help get him through cold season. So far they have been doing good for him. We have been able to get Bentley out of the house more and allowed him to experience the outside which he is beginning to love now that it is not too hot.
We are having to change our Durable Medical Equipment providers due to some issues we were having with some of their personnel and our dealing with a major HIPAA violation with the previous company. I won’t go into to much details so please don’t ask. We are also having some difficulty with getting nursing, especially during the holidays, which thankfully I am able to take over and care for Bentley when we have no nursing but I have been getting exhausted being up for 24-36 hours at a time taking care of him.
Overall, we have had a pretty amazing month of December. We are so thankful to everyone for their love and support. We will be shutting down the gofundme in January and will only be providing updates via Reddit and instagram moving forward.
Instagram:
https://www.instagram.com/bentleydangelo7?igsh=MTJtMzJ5ZWM5OXJscA%3D%3D&utm_source=qr
Amazon list for Bentley and family:
https://www.amazon.com/hz/wishlist/ls/HTYIY188365E?ref_=wl_share
https://www.amazon.com/hz/wishlist/ls/926UIY0EEURR?ref_=wl_share
Gofundme (being shutdown in January) can follow or see his entire story from here:
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Quick before the comments fill up… thank you for the update. Little man looks great. And you deserve a lot of recognition. Not everyone can do what you’ve done the past year. I know you’ll think that anyone could for the love of their child, but it’s not the case. You deserve a lot of recognition. I’m so glad you found this sub - for you and us. Much love
I appreciate it and I do believe that people in similar situations would be able to but having worked ems and witnessed some pretty horrific things I do know better. Happy holidays my friend!
Happy holidays to you too! Your strength is inspiring, and Bentley’s progress is amazing. Keep up the great work…
Hello Friend. I'm happy for the updates on Bentley and soooo happy he is doing well!
I have been following your saga for a while and, out of curiosity, why does Bentley still need the ventilator/trach items? Is there an expected 'end date' or milestone for when to start weening him off of it?
I'm sorry I'm just curious.
Again: so happy he's doing well and you all are having a good holiday season!
Hey there, he sustained pretty substantial damage to his lungs when he got sick in January, especially his right lung and the middle and upper lobes of the lung. He is susceptible to lung collapse in both lungs as well as aspirations from his severe reflux. The ventilator ensures that his lungs stay inflated by regulating the pressure on inhale and especially on exhale to prevent it from collapsing. He still currently has pretty high settings for his pressures but he can sustain himself off of the ventilator for short bursts of time. The biggest problem with weening and taking him off the ventilator is his diaphragm muscles are not strong enough for continuous sustainment of breathing. He will get tired and eventually unable to breathe on his own. So it is a pretty long process of physical therapy and occupational therapy to get those muscles stronger and able to do the work that is required of them. He won’t be on the ventilator forever but we are scared of weening and taking him off, we have another baby that has other problems but was a ventilator baby and they took him completely off (kept the trach but had it capped) and he just passed due to aspirations about a month ago. So we are not in a rush and want to do it as safely as possible for Bentley.
I am so sorry to hear about your other baby!!!! Condolences from the bottom of my heart. (Long distance hug).
Thank you for the explanation - I’ve just been curious since I missed the start of your story.
Again so happy life has been improving and Bentley is enjoying life.
Sorry for the confusion in my reply, it is such a small community with babies on ventilators that we all communicate with each other. When I said we I meant collectively as a group and community here where I live and not my wife and I. I truly appreciate you taking the time to read our journey and ask questions though it is what truly makes this community so welcoming.
This is so true. It's easy to say any parent would do this but the reality is not everyone has the strength to keep showing up day after day through something like this. The dedication and the emotional toll of being there for months on end while staying hopeful when everyone else has doubts, that takes something special. Bentley is lucky to have parents who fought so hard for him
Dude. Seeing Bentley's smile is all I personally needed for Christmas. I am fulfilled.
Merry Christmas to you guys!
Merry Christmas!
I've been following Bentley's journey from the start, haven't commented before;
Dang you are an awesome dad! And what a handsome little fella Bentley is!
Merry Christmas and a happy new year, from the land of Santa Claus! ☺️
Merry Christmas and he definitely gets his looks from his momma!
Proud of you dad, The sheer amount of dedication and love is amazing. Truly one of the best among us. When I can, I will donate
The pictures show so much personality. What a lovely smile. He seems like a cheeky little fellow.
Aww, this is exactly the update I wanted to hear!
I can’t believe how big he has gotten!
Merry Christmas to your whole family!
Oh yeah he is getting really big, finally broke the 18 lb mark
What is that machine on his throat and will he eventuly live without that thing?
That is his trach and a ventilator that assists with his breathing. He can still spontaneously breathe but the machine ensures he is getting the volume he needs at the pressure he needs to fully open and close his lungs. He will outgrow it but his lungs received a lot of damage this year with getting sick. However, just yesterday he was off the machine completely for about 10 minutes before anyone even noticed and he was doing okay. He receives support currently through the ventilator with oxygen supplemented in, a feeding tube via g-j tube, a 24/7 monitor that keeps an eye on his vital signs, and a suction machine to remove secretions from his trach when needed.
That is great if he eventually gets rid of it.
I think if he was fine for these 10 minutes he will probably be fully independent in the future. :)
Has he ever been off that long? Perhaps there is a chance someday he can grow strong enough to have adequate respirations without it then?
It is currently estimated that he will be completely off of it by the time he is 5-6 years old.
Amazing news. Hoping it’s even sooner. Have a very Merry Christmas.
Bentley!! Little warrior stud!! Dad tears everytime I see your posts bruv. I really didn’t know how this story was going to unfold and I’ve been here since day one. You have an amazing family and what you’ve done I can’t imagine. Merry Christmas Bentley and fam
Look at that SMILE!!! So glad he’s here. Thank you for update. I hope your whole family has a very merry Christmas. ❤️ 💚
There's nothing better than a happy baby who looks like an old man.
My daughter went through a male pattern baldness stage and I loved it.
Bentley is looking great ! Merry christmas to you guys !
Thank you for the update, made me smile. Merry Christmas to you and your family!
Merry Christmas to you and your family. Bentley looks like he's thriving. I've been following your updates for months now and they always bring a tear to my eye. I can't imagine what you've all gone through and continue to go through. My daughter is 10 months old and I'm excited for her first Christmas. I get stressed and exhausted just from putting her down for bed, so kudos to you and everything you do for Bentley and your other children. Hang in there man. Life is a crazy journey. Soak in the good with the bad, and hopefully one day you'll look back on these times and remember that you're stronger for going through this.
Wow he’s looking amazing!!!
Have the best Christmas ever Bentley.
Happy for You, Bentley, and your whole family! Love the smiling pictures! You got this dad, you got this! What a year you’ve had, and you absolutely got this!
I was a private duty nurse for just over 4 years! I still have a close relationship with one of the families I use to work for. I would’ve loved to have a patient like Bentley to care for. Merry Christmas to you and your family ❤️
We have had prn nurses come in to fill and ask to switch to his primary care team once they get into his room and see how organized everything is. We get complimented all the time on his room and how involved we are.
I had a family with a similar setup. Very clean organized and you didn’t have to go on an adventure to find supplies!
Yeah we have heard horror stories of having to search for supplies. Thats one thing our nurses never have to do. Every bin is labeled with what is in it. Everything is in plain sight so they can find what they need without ever opening a drawer. They never have to worry about supplies running out or medications running out. My wife stays on top of all the logistics of his supplies and medications. His room is small but very organized and we keep his boards up to date with all his information that they need so they don’t have to look through records to find out how much he weighs or what medications are given at what time.
That’s a gold star family for a PDN! I hope your son continues to grow and thrive. Many blessings to you and your family 🙏🏻
Sending endless love to you and your family
Looking good Bentley!!!
idk, Happy holidays to you too! Your strength and love for Bentley are truly inspiring. Keep pushing through; you've got this!!
I am so happy! Thank you for the update! Lots of love!
I love photo 6, so much personality in those eyes!
The cuteness is off the charts!
Sending lots of love your way
Thanks so much! Your support means the world to us. Bentley’s progress is a testament to love and community.
Bentley!!!
This little man's smile melts my heart. And his cute little bath tub picture in his bathing chair, he is just too precious! Happy Solstice and Merry Christmas!
He's looking happy though! Love seeing him smile! And stay strong dad. We're so proud of you. And proud of him too! Not gonna lie I've been struggling mentally lately and seeing these posts always make me smile a bit. So proud of you guys. I know the lack of sleep gets ya so remember the old military saying. Never stand when you can sit, never sit when you can lay down, and never stay awake when given the opportunity for sleep.
Always and remember yourself to just continue taking it one day at a time. Life may not get better for a while but as long as you make an effort to improve even if it is just getting up and out of bed, you will get to a better place.
Beautiful boy ❤️ seeing his expressions and the smile on his face is really great.
What a glow up. This is the best gift your family could’ve gotten and I’m so happy for you mate.
That black diaper(?) diaper cover(?) is so metal! I am glad Bentley is doing so well.
Haha that is his wash cloth we didn’t wanna flash everyone! That was his very first time ever in a bath and he was so confused by it but after a little bit was in love with it. He definitely is a metal head though!
❤️❤️❤️ you are amazing! Bentley is blessed to have you!!
Merry Christmas Bentley and family 🤠
He looks awesome. So happy to see the journey !! Merry Christmas Bentley! :))
uh, Thanks so much! Your support means the world to us. We're all in this together…
Merry Christmas Bentley and family!
We have some complications with my newborn. It’s been tough but nothing as close as what you guys have/are going through. Whenever I’m struggling I really do think “man, Bentleys health problems are far more severe, so if his dad can pull through it all I can too”. Thank you for sharing and staying so strong for him. Your story has been a huge help to my family.
I appreciate it brother. Hang in there and I will pray that the complications get resolved as quickly as possible!
Merry Christmas Bentley!!! I have been following from the start and am so happy he is doing better!
Love seeing the smiles. Merry Christmas, Bentley and Fam!
Amazing news! Sorry for asking, but do you know if/when he will be freed from the ventilator?
Only true time will tell, but the way our pulmonologist explained it is like this: when he got sick in January (and essentially every time he or even we get sick) a part of his lung becomes scarred. This scarring makes that part of the lung less elastic and more rigid causing it not to expand at its peak. Our lungs are like sponges and when that one part becomes more rigid it doesn’t allow the oxygen to complete its transfer through the little alveoli’s and get to the capillary’s to go to the blood. Now with severe scarring like what Bentley has, thankfully he is so young and the lungs have not fully developed yet, it prevents a significant portion of the lung to not expand and absorb oxygen on its own. The ventilator helps his lungs expand by creating a certain pressure and volume in and out as he inhales and exhales. This forces those rigid parts of his lungs to open and allows the oxygen to reach the alveoli’s. As he grows and develops the scarring will not disappear but rather get smaller ratio wise to his total lung capacity making what is now considered a large portion of his lungs scarred, much smaller ratio wise.
In plain terms, as he grows the scarring will become significantly smaller compared to the rest of his lungs allowing the rest of the lungs to compensate for that scarred portion. The lungs go through a rapid development stage around 4-6 years old at which point the doctors expect Bentley to be able to fully come off the ventilator. They did however say that it could happen as early as 3 years old. They are confident that as long as we can keep Bentleys lungs healthy until we hit that rapid development that he will not require a ventilator after that point. They also stated that he will always have some form of asthma but its severity is undetermined right now.
I love these updates. Seeing Bentley's little smile is a joy. These tiny hands are holding such greatness! What a beautiful family you have, you and your wife deserve the world.