Laines World

Our first week with our first RN since having the trach was an absolute success! Last night was only her third shift and I don’t think me or Josh had to get up with them one time. I peak in on the monitor in the middle of the night and she’ll comfort him to get him back to sleep if he’s awake… she’s very soft spoken and gentle.

This nurse also has ICU experience. She handled a pretty significant o2 desaturation yesterday with ease. And she’s filling all of her hours with us!! That part is important to us for a few different reasons. Laine is a lot to learn and it’s easier to learn him if you’re not trying to keep up with other high needs patients.

If everything keeps going well, I think Josh and I could have our date nights back by next month or so!

Happy Memorial Day!! 🇺🇸

We attempted the parade. I wish they had a special section for kids in wheelchairs so that they could have a shot at getting some candy. It’s okay though because my boy got a SpongeBobsickle!! Hell yeah brother!!! 🇺🇸🤘🧽

It’s our first year celebrating Tracheostomy Awareness Week and today I want to bring awareness to the fact that happiness and trachs can coexist. 🤍

It was almost a year ago that Laine was admitted and intubated for the third time that year. 3 different admissions & intubations in 6 months. As his parents, we knew it was time. Not a single doctor or medical professional mentioned it to us during that admission, we did. Nobody pushed it on us or made us feel like we HAD to do it, we just knew we couldn’t keep putting him through that. He lost his two front teeth due to two different intubations.

His last intubation was difficult. They couldn’t get IV access before they had to intubate. He was awake and alert and fighting so hard… they ended up having to give him a ketamine shot in his leg which I think worked, but I don’t even know because we can’t be with him while he’s being intubated. I wouldn’t want to see it anyways.

Since having his trach, we have been able to stay home and out of the hospital for almost a record breaking amount of time. Josh and I have studied and learned so much about airways, lungs, vents & so much more. Laine is adjusting well. I say is, not was, because he’s definitely still adjusting almost a year after his surgery.

While there has been some physical regression to his muscles and his ability to move which is one of the hardest parts of this process, we know now that he will have time to relearn the things that he once knew how to do. Time. He will have time.

It was the most important question that I asked his team during one of our meetings about the trach. Will this just give him some months? Or will we get years? It was a hard question but our palliative care doctor urged me to ask this. I’m so glad that I did because the PICU and Pulm team either nodded or smiled warmly and softly answered “years”.

Deciding to trach our son was one of the most difficult decisions we’ve ever had to make. I won’t lie, at first when I saw him for the first time, I had felt like I had mutilated my baby boy. Probably for over a week I had felt like that. It was agonizing… I felt like a terrible mom and I had such a hard time looking at him. Once his swelling went down, the paralytic was turned off and his pain meds were weaned, I started to see glimpses of my boy.

Laine is himself now. His personality is the same as it was before the trach. He’s a happy kid. He holds his trach circuit for comfort. I truly think he’s grateful for it. I know his parents certainly are.

If you ever find yourself in a similar situation and you need advice or guidance or comfort or just need to vent and cry; please reach out. Go to the ParentWise meetings, befriend other trach families, breathe. I promise it gets a little easier to breathe once you know your child is. 🤍🩺

Good Morning Born Abel Family! 💙

This week is Trach Awareness Week, and we are sending so much love to all of our incredible trach warriors and their families. 🫶

A tracheostomy (or “trach”) is a medical device that helps someone breathe when they need extra support. For many children in our community, a trach is not just a piece of equipment — it is part of their story, their strength, and their journey. 💙

Behind every trach warrior is a family learning suctioning, emergency care, sleepless nights, hospital stays, and advocating fiercely for their child every single day. It can be overwhelming, exhausting, and scary at times… but it is also filled with resilience, courage, and so much love.

This week, we honor the children rocking their trachs proudly, the caregivers carrying so much responsibility, and the medical teams helping these amazing kids thrive. ✨

To our trach families:
Your children are beautiful.
Your journey matters.
And you are never alone here. 💙

If you have a trach warrior, we would love for you to share a photo and tell us about them in the comments! ⬇️

If you are a trach or tube-fed family, we would absolutely love to invite you to join our Trachie & Tubies Club! 💙

*EDIT*
~
we will NOT be doing therapies over the summer. Ronald McDonald is telling us that instead of extending our stay, we have to check out tomorrow and immediately be put back on the waiting list for a room. Instead of allowing my trach and vented kid to rest after his hospital stay, he has to go home tomorrow and come back Sunday IF they have a room available.

I wouldn’t be as frustrated if we would’ve known all of this before packing up EVERYTHING WE NEED IN THIS WORLD from home and then unpacking everything at midnight last night to ensure an early discharge for my boy. Little did I know, if he had stayed one more night in the hospital, we would’ve been able to keep our room. *if this is making no sense to you, it isn’t to us either!*

We are going to just try to have a great summer at HOME. We will do what we know we can do with him as far as therapies go. For his equipment; we will just have to be back and forth which is perfect timing because gas is so affordable right now!

Pray for my boy to get stronger with just Mom and Dad over the summer and pray for Josh and I as this can all just be so overwhelming it’s hard to breathe.

~

Got pretty much all moved into RMH for the summer last night & then busted our boy out of the hospital this morning! He starts therapies Wednesday. We’re gonna get his wheelchair process started again while we are out here, too.

One of our biggest goals this summer is to get Laine back on his feet. We have a beautiful, brand new stander at home that he’s only gotten to use a handful of times because of back to back admissions. Now, it’s been about a year since he has stood at all… two summers ago he was able to stand for longer than an hour at a time. I would just be happy to see him in the stander for 5 minutes at this point. 🤞

Thank you all for your prayers! It turns out it wasn’t a UTI, but it was tracheitis, which is a common infection at the trach site. The first time he had tracheitis was right after his surgery. It’s incredibly common, unfortunately, even if everything you do is sterile. A few days of antibiotics & our boy is back to himself!

Thanks again for all the love 🫶🏼