Trach/vent

And The Walking Boy Walks

On Twitter last night I made fun of myself a bit for being too lazy to post here. I have been writing, I just haven’t been happy enough with anything that I felt I could post it here. With today being my day off I had high hopes that I would get some writing done today and was confident that I would polish something enough to post. I suppose that there’s a chance I still might.

But instead, and only because how could I NOT post this, I have to share a photo.

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Liam has been reluctant to work in his walker lately. In fact on the way home from school today Karin and I realized that Liam hasn’t had a good day in his walker since before the month-long hospital stay last fall. Don’t get me wrong, he’s worked hard all school year but he had so much physical therapy to catch up on that he simply didn’t have the strength.

There’s nothing better than having a day off of work on any of Liam’s school days. Then I get to pick him up and participate in his therapies. He may have been holding his Mom’s hand in the picture above, but he was also walking towards something today.

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His Dad.

Thankful

For Liam’s vent, because nothing will work better at ensuring that Karin, Liam and I will be home in time to see the kickoff of the Patriot’s game after Thanksgiving dinner better than the phrase “aww shucks, looks like we’re almost out of battery power.”

For Liam’s pulse oximeter, because watching him fake that he’s asleep when he gets overwhelmed seeing all his relatives at once is one of the more adorable things you’ll see. Watching his behavior and how it correlates to his heart rate just proves just how impressive an actor Liam is.

For cell phone cameras and nurses who enjoy playing dress-up at school.

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For the superhero in my life who inspires, amazes, and strengthens me more and more each day.

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For family

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For all the little things that make our life our life. It may not be perfect but there’s a whole lot more than just this list within it for me to be thankful for. It’s nice to take a moment and remember what they are.

I hope you spend the day finding joy in the things you are thankful for.

Happy Thanksgiving.

The science of sleep.

This is the face of an exhausted boy who had not slept in 36 hours.

I wouldn’t even call it a symptom really, more like a subtle change in the rate of Liam’s breathing and the quantity of his secretions. It wasn’t alarming but something worth noting and so when we called the nurse practitioner from our pulmonologists office she suggested we try a course of steroids to see how he responded in case it was the onset of something asthmatic. Liam has never been diagnosed with asthma but he has responded well to steroids in the past and since we are on the cusp of flu and cold season thought the benefits outweighed any risk. We agreed to start the steroids.

We saw a small improvement in the “symptoms” but since they were fairly small to begin it could have been anything. What we also saw was the insomnia that can present in kids on the juice and within 5 days we watched Liam struggle to find any sleep at all for 36 hours, twice! I snapped this picture on a saturday morning. The last time he had slept was thursday.

We called into the pulmonolgist and told them we were stopping with the steroid. The side effect of insomnia was more powerful than its intended effect of boosting respiratory strength. With no sleep come more seizures. A night without sleep means a day without calm. The house fills with anxiety, knowing what is coming.

Despite the fact that we had already given his morning dose of the steroid we were now stopping, Liam must have heard us discussing it because almost instantly after the phone call ended Liam drifted into a nap.

A nap that would last until the middle of the next week. He slept through his haircut and he slept through school.

don’t worry I’m a ninja

He did all this to taunt us I’m sure. It’s been over two months since we have had any nursing help overnight,(the agency is working on it) which of course also means that Karin and I haven’t slept more than 4 hours a night in two months. We haven’t slept in the same room in two months. Haven’t had that euphoric buzz of being well rested in two mo . . ..er, four years, . . . anyway.

What I’m saying is we’re tired, and while you would think that with Liam sleeping too well it would be a good time for us to catch up on some rest. Well, you could think that,

But you’d be wrong. The whole point of the phrase ’round the clock care’ is that it doesn’t matter if he’s asleep or not.

Of course we spent all the hours he was awake with him, awake as well. We spent the nights after the sleeping spree started with him, awake, only this time waiting for him to wake up. Always expecting the three-day spell to snap. Waiting for the other twitchy shoe to drop.

In another of fate’s cruel twists, lack of sleep brings on seizures, but too much sleep can bring them on just as much, sometimes much, much, stronger.  His mind trying to claw its way through the fog of sleepiness but getting lost and detoured along the way. Not too much, not too little, it is extremely important that Liam gets just the right amount of sleep. He’s like freaking Goldilocks in that way.

And so I’m sure that he needed the sleep but we tried whatever we could to keep him awake for any length of time to no avail. Low muscle tone and all, whether it’s on the couch, in his chair, and even in his stander Liam is always in a supported position, a position comfortable enough to sleep. That is until he had to see his girlfriends at school.

His girlfriends who don’t take excuses like I’m tired or I have seizures. Girlfriends who expect Liam to work his ass off for a half hour and refuse to take no for an answer.

He woke up for them*** alright. And you can see how he felt about doing it in that expression on his face.

I hope you are all getting just the right amount of sleep for your needs.

G’night.

**** Just because I want it to be clear. Yes he looks extremely uncomfortable in this picture but I do mean it when I call Liam’s physical therapist and occupational therapist his girlfriends. He has a very special bond with both of them. Not only because they are gentle and kind but BECAUSE they take no excuses and expect him to work hard for them. Which he does.