Access

Screen Time. 

Timing. It’s about timing.

When games aren’t really games.

Wait for the ring to surround the space invader.

Hit the headswitch when it does.

*BOOM*

Explosions. Fireworks. Applause.

Change to the communication app.

It’s about timing.

Wait for the green box to surround the words you want to say.

Hit the headswitch when it does.

*BOOM*

“Yes”

*BOOM*

“Hi Mom”

*BOOM*

“I love you”

 

You guys can control the screen time of your kids all you want. I get it. It just doesn’t work for our family. An ipad with a headswitch acts as Liam’s voicebox, in the same way that his vent acts as his lungs. And not so long ago neither would be possible. Especially at home and not in an institution. Not so long ago, the technology wasn’t there.

It’s about timing.

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The Limited Edition Olson & Son Hopyard T-shirts are still on sale at this link until September 1st. If you’d like the hottest Pressuresupport and hopyard gear do not miss out on this sale. We have achieved our goal number needed to guaranteeing a print run, so there’s no doubt that shirts will be shipping out about 10 days after the sale ends.

I want to thank everyone who has ordered, or shared the link for all of your help and support. So many people shared the sale page link that I was near tears at work trying to thank everyone as it was happening. It happened so quickly that I was overwhelmed by how many of you out there wanted to get the same shirt Liam and I wear. The Olson family appreciates all of you.

 

 

Good Day / Bad Day

In the span of 12 hours yesterday Liam endured an EKG, an EEG, an unsuccessful attempt at placing a picc-line (a fancy IV in which the catheter extends all the way to just outside the heart), a two hour ultrasound with the rudest medical professional I have ever met, the insertion of a central line into his subclavian vein  (another fancy IV line directly into his chest) by the surgical team and a CT scan of his brain. So I guess your day wasn’t as crappy as you thought was it?

For my part in this mess I took on the role of pacing, sweating, swearing at our medical team, huffing and puffing in pure rage and coming dangerously close to being escorted from the building by security for almost punching the radiologist I mentioned above. That was my job yesterday and I did it to the best of my ability and if a few of the residents remain intimidated by me then so be it.

Karin on the other hand was FREAKING AMAZING! She was calm and collected. She was able to prioritize the specialists and all of their tests like an all-star air traffic controller. While I raged she remedied. While I screamed and swore, she settled and soothed. While I got stressed and worried, she got even more confident and calming. Her grace yesterday is something that I will not soon forget.

And that is how we make this work. On tuesday Karin was the worried one, and even though it wasn’t as crazy a day as yesterday it was a day of worry, what with Liam in the throes of septic shock. That stress and worry which manifests with anger in me, is instead sadness in Karin. Some days I get to be the strong one, and others, not so much. The wonderful part is that they very nearly never overlap.

By 9pm things for Liam had finally calmed down. With the subclavian line we had our access both for putting meds in and drawing blood for labs out. We were made  aware of the large blood clot in his leg (clogging up his original central line) and immediately beginning treatment for it. We had a new seizure med introduced to compensate for the fact that 2 of his 4 meds have no IV equivilant, and we had a full 12 hours of blood pressures remaining within the safe and allowable limits we had set. By the time I left for my turn at home Liam was sleeping comfortably and Karin was setting up the bed in Liam’s room to get some rest herself. We may have turned a corner yesterday. No thanks to me.

I was too angry to even see the corner coming, and I’ll be damned if I was going to turn this thing around and ask for directions.

It’s a good thing Karin was.