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Hello & Welcome

The Reimer Family is a special needs family from Canada. We will update you on #MightyTimothy and #EthanStrong and hopefully inspire you along the way.

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mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time.
📍Ontario, Canada

4:30am wake ups are exhausting. He’s been waking

4:30am wake ups are exhausting.
He’s been waking up super early, and then can’t fall back asleep because he’s coughing too much 😓

I found out today that we most likely won’t have a night nurse through the rest of the year. They just don’t have anyone to fill the position and the nurse that will become available once another child moves into a different program is still with the other family until that transition is made, which can take quite a while apparently.
So our nursing manager said she doesn’t think it will be done this year and they’re not getting any qualified applicants for the listing they’ve posted.

That felt like a kick in the gut.
We’ve been without night nursing since the school year started.
It’s been hard.
I don’t sleep well because my brain knows it may need to jump into action at any moment, so it doesn’t fully rest.
I’m always worried that I will miss something. That he will choke, have a seizure, need something, and I won’t notice because I’m asleep.

He has a monitor on him for night which helps, but it doesn’t pick up everything.
His vitals don’t change with every type of seizure he had and prolonged seizures can be dangerous.
His alarm didn’t go off the other night when he threw up and aspirated. It took till around lunch for his numbers to start looking worse again as his body was struggling with what happened at night. And that was the second hit to his lungs within a week, one that could have been much less severe had someone been available to help support him.
Not all serious issues are caught by that monitor right away.

He qualifies.
For 5 nights a week.
Which is a big deal.
There’s a reason he qualifies, because he needs it.
But he’s not getting it.
Because no one is available to do the job.

And that’s scary.
And sad.
And not fair.

Please pray that we find someone.
He needs it.
We need it.
I want him as safe as possible, and that includes someone qualified to watch over him most nights of the week which also allows my brain to rest so I can do better during the day.

We try our best, we really do.
He’s loved, cared for, making beautiful progress, is happy and very safe.
Having a night nurse would just make it that much safer.

When your pedialyte matches your feed bag 💁🏼

When your pedialyte matches your feed bag 💁🏼‍♂️

We’re still dealing with lots of coughing, occasional saturation issues - we’re thinking he’s struggling with secretions that build up, so we go through our million step regime and he does better for a while, while keeping up with our maintenance supports too.

We got clearance again from the Paediatrician to take him to his therapies however much he tolerates it. He gets out of breath quite quickly, but she said that he needs to move as much as possible and that he’ll let us know when he’s had enough.

This last week has been absolutely exhausting.
So.
Exhausting.
But we’re home, so it’s worth it.
We’ve had a couple scary moments, close calls to making that scary 3 number call but I’m so thankful that we’re home. And I think we’re past the acute phase of it, as long as he doesn’t throw up and aspirated again.
We’re in the lengthy, slowly recovering phase that seems to take longer with every hit his lungs take.

On day at a time.

We put up the Christmas Tree today 🎄 Timothy h

We put up the Christmas Tree today 🎄

Timothy has been looking forward to it all week. Normally we decorate it at the beginning of December but it was time for some Christmas cheer.

I love that Ethan got to stand by the tree and help decorate it....well, more like relocate things...to the floor 😂

We used the Upsee without the foot attachment today so he could stand, dance and have lots of fun by the tree 🥰

#upseebyfirefly #fireflysuperfan #sponsored #christmascheer

This sweet wild child keeps me going 😝

This sweet wild child keeps me going 😝

This is the world we live in right now: Ethan had

This is the world we live in right now:
Ethan had an appointment booked with the paediatrician (we booked it about a month ago) and this morning I called to double check they would still see him in person because he’s sick.
So, for 2 hours I waited to get a call back to see if my sick child would be allowed at the doctors office because the front desk staff didn’t know and sounded super scared about it.
Did you read that?! I sat there waiting to hear if my SICK child could get seen by a DOCTOR, the place you take sick people, or if we’d have to cancel the appointment.

When they finally spoke with the paediatrician she said that of course she would see him as it’s pretty obvious why he’s sick, and we did. But goodness, guys. Today was something else.
During that wait the world felt so confusing. How are we at the point where a mom sits there waiting to see if the person whose job it is to see sick people, will see her sick child.

Anyways, we made the drive and his lungs still sound pretty crappy. She agrees that he probably aspirated again the other night and we actually had a hard evening with him with his sats once he fell asleep but we got them back to an acceptable range and she was happy and comfortable with what we’re able to do for him.
We’re going to finish his course of antibiotics and if we feel he still needs more support when they’re done, we’re supposed to call and we’ll come up with a plan then to maybe lengthen it or add a different med.

So we continue with the slow feeds, antibiotics, the ventolin, chest physio, and whatever else supports he needs to get him through this. His coughing fits are absolutely heartbreaking 😔

We’re happy that he’s more lively overall, we just REALLY need his lungs so start sounding and doing better and for him to not puke anymore/again so his lungs can actually heal, as much as they can at this point. The longer his lungs are in this spot the harder of a hit they’ll take.

Brain Injury seems to make everything 10x harder than it was before 😩
And then cold and flu season and a worldwide pandemic certainly don’t help.

#ethanstrong

Ethan was starting to feel better, but then 2 nigh

Ethan was starting to feel better, but then 2 nights ago he threw up in the middle of the night and we think he aspirated again (he needs a night nurse!), so we’ve taken several steps back.
His lungs haven’t been sounding great and he gets these really bad coughing fits that are a tad scary, for several reasons.

I’ll admit, I’ve never been more scared to feed my child than I am right now. If he has a full belly and has a coughing fit, he’ll throw up. And because it’s a coughing fit, aspiration risk is even higher than just a regular puke 😩

The benefits of tube feeding is that we can slow down his rate which keeps him safer. So for now, until his cough is better controlled, he’s getting his food nice and slow so he still gets what he needs without having a big belly FULL of food.
This also helps us to make sure he has the best chance at keeping as much down as possible so he gets everything he needs to have energy and grow.

Sometimes I’m thankful for the feeding tube. When it comes to meds and food/water intake when he’s sick, it gives us a huge advantage.

We’re hoping to still get in with the paediatrician today to get him seen again and maybe change things up a bit.
Overall he’s in a better mood and has more energy than he did last weekend, but we need those lungs to heal 🙏🏻

#ethanstrong

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