Vent

The Year (so far) in Pictures

Full disclosure, If you follow me on Instagram (pressuresupport) or Twitter (@pressuresupport) you’ve probably already seen most of this, But this way, you can see it again all in one place.

Yay?

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I guess I just picked the wrong year to fall off of my blogging game, because Liam’s 6th year has been a pretty good one.

As you may recall the northeast got buried under record amounts of snow this year. Here in Rhode Island we got clobbered. I usually don’t mind the snow but in 2015 I anticipated the spring in ways I have never looked forward to a season in the past. Liam agreed.

So the year started out a little rough, but as we always we do, we trudged through it, and made it to the good parts. Let’s be honest, no year is going to be perfect, and we’ll never be able to look back on a time period as long as six months of Liam’s life without a bit of medical drama. All things considered, the first 6 months of 2015 were pretty good in that regard, with only a few blips along the way.

Blip the first was when Liam’s physical therapist thought there may be something a little hinky going on with Liam’s shoulder and recommended we see the orthopedist. Which we did, making sure we got in there as soon as we could.  The orthopedist, realizing he hadn’t done a full workup of films on Liam in a long while ordered the works instead of just his arms and shoulders. It seemed like a good idea, so we agreed to get a bunch of extra x-rays while we were there.

You see? I never stopped thinking like a blogger. Who but a special needs parenting blogger takes a picture of his son getting the x’ray work up?

The films came back quickly and we got the news that afternoon over the phone.  Liam’s shoulders are both completely fine.

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His hips however are both dislocated.

Naturally. They grew that way, and although the shock of hearing it had me very worried for a little while, this is far from uncommon for children with muscle tone issues like his syndrome presents. Liam is showing no signs of any pain or discomfort, which is why the diagnosis came as such a shock. In fact unless he shows us otherwise, because there’s no sign of pain or circulation issues, because he can still use his stander and his walker, and because his spine is straight as an arrow, there’s really nothing to be done about it anyway. Liam will just live with a couple of naturally dislocated hips. Add it to the list.

He’s still a rock star.

Dislocated hips? Don’t care, I’m still walking.

Medical blip the second, a short hospital stay for a bout with pneumonia. Just one of those things that happens, and a chance for Liam to visit with and show off for all the doctors, nurses, and therapists at the Hasbro Children’s Hospital PICU that he hadn’t seen in so long.

Yes other than that Liam stayed away from the hopsital for the most part this year. And it showed, because being 6 years old has been a year for Liam to be where he belongs. Out and about and in the community.

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This year, beginning in January, once the school was finally set up to handle Liam’s needs with the wheelchair lift finally installed, and his teacher and the classroom aides really getting to know how to effectively communicate with Liam, he really started excelling in kindergarten.  With reports of improvement in all sorts of areas, including the making of paper ducks.

But like any kindergartner, Liam enjoyed the special days more than any. Like when a turtle came to visit the class.

And “Take a Special Friend to School” Day, where someone very special got to spend the afternoon with Liam and his whole class for an afternoon. Recess was my favorite part!

Or on field day where Liam and his nurse/ninja/best buddy Walter competed in the three-legged (and two wheel) race.

Outside of school things were just as good this year. If you’ve followed me for very long at all you know just how much the Roger Williams Park Zoo in Providence RI means to us and to Liam. This year has seen no change to that. In fact this spring when strolling the place we were stopped more than once by Zoo staff who knew and recognized him as Liam! the boy who named Anton.

When Liam goes to his hometown zoo. He gets treated like a rock star.

But not only by the people there.

Liam has fans of all kinds at Roger Williams Zoo.

 

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Dream Night this year was fantastic as it always is. I didn’t take as many photos though, I was having too much fun just taking it all in.

And so was Liam.

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But it wasn’t only when out in the community that Liam had a great year. He had some good times at home too.

 

Like on his swing in his own backyard.

Or showing off for his mom and I when using his head switch to utilize the communication apps on his ipad to answer yes and no questions.

And as much as Liam likes working with his ipad, he’s an old soul and still loves the feel of a good old fashioned book. So a gift of books directly from the artist and writer himself (who went to school at RISD with Liam’s Grampa, my dad) was an especially exciting treat.  Thanks Aaron!!

 

Not as big a treat as hanging out with Dad in the driveway while brewing a new batch of beer using Olson & Son Hopyard hops though.

Liam is an exceptional assistant brewer.

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But the thing with being around Liam is that there is an aura of joy that follows him, not only during special events or during treats. There is a joy just being around him just resting on the couch or going for a walk around the block.

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There was a time when fathers would keep pictures of their kids in their wallets to share with co-workers friends and anyone who would listen. Today we have Twitter and Instagram, facebook and our blogs for that, and here’s mine. While on my blogging hiatus I heard from so many of you who wanted to hear about how Liam was doing and missed seeing his pictures. I’m sorry about that. Along with more essay posts about parenting a child with complex medical needs, I forget how many people just like seeing Liam’s smile.

I won’t forget that again.

Here, have one more smile at the end.

Like I said, the first 6 months of 2015 have been pretty good so far. Let’s hope it keeps up, and if it doesn’t, as long as I get to see that smile every now and again, we’ll get through whatever this year can throw at us.

 

Dream Night 2014

 

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Photo by Karin

The magic started when we met Hooligan, before we even entered the zoo. Hooligan, a Providence police horse, who was kind, patient, and gentle enough to meet Liam on our way into Dream Night at the Roger Williams Park Zoo this year. That’s the way things are at Dream Night, from the zoo staff walking around with snakes and lizards, to the docents volunteering in costume, the Hasbro Children’s Hospital employees checking families in, the face painters, jugglers, musicians and temporary tattoo artists, even the police officer on horseback at the zoo’s entrance, it is everyone’s mission to ensure that these kids with special needs, their families and even their carers have an even more special night.

 

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Photo by Karin

No exaggeration, Dream Night is our favorite event of the entire year, and after being rained out last year we have been looking forward to tonight for a long, long time.

 

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Dream Night  began at Rotterdam Zoo in 1996 and is now celebrated in over 170 zoos worldwide on the first Friday in June. In fact Roger Williams Park Zoo was one of the first zoos in the country to have a Dream Night, and it shows. Their dedication to this event rings true in the exceptional attention to helping each and every family have as much fun as they can possibly provide. 20140606-213334-77614438.jpg

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Trachs and vents, wheelchairs and walkers, extra chromosomes or chromosomes missing a piece, from CP to Spina Bifida and any other neurological disorder, none of us feel out-of-place or different at Dream Night. The only night of the year that we can say that. At Dream Night more than any other night, we all feel a little more normal. Absent are the stares and frightened looks we’ve all grown so accustomed to. Instead there’s an understanding of our struggles, and a night to forget them. An opportunity to relax in a public space knowing that every other family there in some small way knows exactly why this night is so special.

 

So freeing.

 

So much  fun.

 

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This year we even toured the veterinary hospital in the zoo. Not lost on us was the fact that so many of our families there tonight have more than a passing knowledge of hospitals so being allowed to walk around their hospital may have been my favorite part. Ultrasounds, x-rays, and endoscopy machines exactly as we have seen them used on our own children right down to the end tidal CO2 monitor. It was surprisingly fun to see just how similar the hospital facilities at a zoo are to the hospital Liam has spent so much of his life in, which I think is exactly why they open up the veterinary hospital for this event.

 

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There were snakes named Chuck (pictured above) and Elvis, a miniature donkey named Willy, and a Gecko whose name escapes me. The giraffes and elephants were happy to enjoy their nighttime feeding in front of a crowd even though they normally eat in peace after the zoo is closed. There were no lines to wait in and not once did it feel as if Liam’s wheelchair was in anyone’s way. Even if it was. No one would have said so. We exchanged hello and knowing looks with families we’ve never met but who probably understand our life better than many of our own friends.

That is the magic of Dream Night.

 

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Photo by Karin — It’s the simple attractions like these types of photo setups that we never really get a chance to get near on a normal zoo day. It takes time and effort to get a wheelchair setup back there. One of the thousands of reasons why Dream Night means so much to us.

Only 364 more days until we can relive that magic again.

 

Thank you, thank you, thank you to the wonderful people who made this night possible. The CNDC at Rhode Island Hospital, Hasbro Children’s Hospital, and all of the Roger Williams Park Zoo staff and docents. Your effort and enthusiasm are noticed and appreciated and while the Olson family will probably see you again over the summer, we already can’t wait for this time next year.

 

Editor’s Note: I was much more wordy in 2012 for Dream Night and I brought my real camera instead of just using my phone. This year I decided to not worry about pictures so much and just worry about having a great time with my boy and boy did I.

 

Tired.

About 12 hours from this writing will mark 8 days since Liam has used bottled oxygen. That’s the longest he’s ever gone without O2 in his lifetime.

Last Thursday was Liam’s 4th IEP. Talk of kindergarten and adapted physical education. Goals, therapies, benchmarks and progress reports.

Spring is happening and the hops are poking out of the ground.

In just the last week there been so much going on that I should be blogging.

But I’m tired.

Though no one’s fault at all, circumstances left us without a nurse for the past week as well. I’m not going to explain all the little things that changes for us and our routine because, again, I’m tired. Karin and I are more than capable of taking care of Liam without nursing, (Although, while I am positive that Karin would be just fine doing this without me around, the opposite is so far from true. I’d be lost) round the clock care without any breaks will wear you down.

So while I’d love to blog about oxygen, IEP’s, and the need for us to learn to trust more nurses (in case our favorites can’t work), I’m tired. Liam seems to be asleep, and Netflix now has some Green Lantern cartoons that I can watch until 4am when Karin will get up and I get to go to bed. Watching cartoons is easier than blogging and like I keep saying.

I’m tired.

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Liam’s Tea Roses

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They didn’t start that way. They started as Karin’s tea roses. Barely wider than the smiley face vase they arrived in, the small plant with four bright yellow flowers was a “just because your my sister” gift from her older sister who lives in South Carolina. They immediately found a home in the front window. A window that sits just a few feet from Liam’s spot in the living room, and by default, a few feet from his ventilator.

It takes humidity. The breaths of a ventilator are dry, dry enough in fact to dry out and damage lung tissue without humidity. A small humidifier sits below his ventilator and warms water into the tubing or “vent circuit” about three feet before Liam’s trach. The closer to Liam’s internal temperature you can make the water the better, but like any treatment it’s all about balance. Warm air inside the tube with colder air around it means condensation because science. Instead of moist air we get plain old water. You know, liquid, the stuff you drown on if it makes it’s way down a tube directly connected to your lungs. So you see the problem. The solution? The condensation cup. (Someday I’ll even explain the HME or “external nose” Liam wears when on his portable vent without a humidifier)

Listen, I’m pretty lazy. When the little cup needs to be emptied out every few hours (even more in the dry winter months) I could walk it all the way into the kitchen or bathroom, or I could pour it into almost anything else I can find that could fit three oz. of water like say this conveniently placed vase of flowers on the window sill. You do the math. It was over a week old when asked Karin if she was doing the same thing and it was then that we realized that this plant was not only surviving but thriving only on Liam’s breath.

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As a blogging parent it’s my job to over emphasize and find meaning in these little things. I mean technically most of the water is the sterile water we pour into the humidifier and even that is into his inhalation side of the circuit and not the exhalation tube but every single drop of the water given to these little tea roses spent time in Liam’s external “airway”.

There are over a dozen buds getting ready to open now. At least a dozen have formed, grown, dried and fallen off. The cats took two weeks before they stopped eating the leaves when we weren’t looking. The below average temperatures we’ve had in the past month meant the radiator below attempted to kill it with heat and dryness to no avail. I’ve never seen a plant sent through the mail last this long.

This plant has the strength and determination of Liam within it.

We’ve only known a couple of months of life without a ventilator. In his first days enormous machines whirred and alarmed next to his isolette. They saved his life. Machines. Robots. Again at 7 months old after a few months on a nasal cannula the same huge machines saved Liam’s life again. Robots. Wiring, circuitry and plastic, can be beautiful. Liam wouldn’t be here without any of it.

We have small machines at home. Liam’s machines. Wiring, circuitry and plastic.

And every breath they help breath into him he breathes life into them.

It can be beautiful. As beautiful as a dozen little yellow tea roses.

Staying Ahead

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It’s hard work being five years old.

I haven’t posted much about seizures lately because things were going so well, I certainly wasn’t going to be the one to jinx it all. Without a doubt, 2013 has been Liam’s most comfortable year in regards to seizures.

The year started shaky as we got used to intervening with either versed or diastat daily but in May all that changed when Liam had a seizure that lasted close to an hour.

It lasted through the hemming and hawing of a night nurse who no longer works here not waking us up until it was way too late. It lasted through the ambulance ride to the hospital. It lasted through multiple medical interventions by ER and PICU docs. It lasted until Liam, already given multiple IV doses of Adivan was given a loading dose of phenobarbital.

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And then, as quickly as it all began, it ended. Defeated by dose after dose of sedation and more than exhausted by the electrical storm in his brain Liam lost consciousness. He would be discharged from the hospital the next morning without any other symptoms present.

Liam wouldn’t wake up for three and a half days. Sadly, we’ve seen this type of thing before (actually on more than one occasion we’ve had to medically induce a coma for weeks at a time.) We weren’t surprised as we knew how long the half life of all the phenobarbital he took was but it was starting to concern us. On day four Liam woke up and though he was groggy for another 12 hours, he was, in essence, none the worse for wear.

I’m sure that both Karin and I were marking the days in our heads but niether of us would say it out loud for at least a month in fear that talking about it would end it all.

A Month?!

A month without any seizures. A month without even the twitches and other signs of underlying seizure activity, and then one month turns into two. Two into three and before you know it an entire summer has gone by without a seizure. It would seem that a near overdose of anti seizure and sedation meds worked as what we like to call Liam’s “reset button”. He was awake more, he was more attentive at his school programs. He was alert and active (and now I’m all out of a adjectives for this alliteration).

We’ve had to medically intervene with some seizures lately. I’m pretty sure it’s been four times in the last 6 weeks. 4 times last year would be a day and a half so I’m certainly not complaining. It’s the start of something bigger though so it’s time to make a change.

The thing is, it’s never going to stop chasing him. It will always catch up. Whether by weight outpacing recommended doses or side effects outpacing the benefits, be it seizures or their “treatments”, nothing lasts.

It’s time to make a change.

What we are seeing now are signs that these are no longer tonic-clinic seizures but Liam is back to what we used to call “infantile spasms” but now due to his age, the neurologists call them “epileptic spasms”. Of course most of his current medical cocktail are ineffective against spasms and so after a phone call with Liam’s neurologist this morning we’ll be re-starting a med that proved itself early on in Liam’s life. We’ll get an appointment to go into the office next week to start weaning off of some of the other meds he’s currently on but for now we want to get ahead of this.

Liam needs the head start because while five or six big tonic seizures a day last year was hard, the thirty or forty spasm attacks a day when he was an infant was even harder.

I hate every single seizure med and treatment that Liam had ever tried, but I hate the seizures more. So when they bob we’ll weave. When they zig, we’ll zag. I’m not happy about changing Liam’s medical regimen but I’m hopeful. Hopeful because this treatment has worked before and he’s been off of it for a few years so hopefully it’s still effective.

We’ll see.

Learner’s Permit

Liam has never crawled across the room to check out something shiny that caught his eye.

He’s never darted away down the grocery aisle for whatever the reason is that children dart away down the grocery aisle. To Play, or investigate, to explore.

In that crawl or the sudden sprint by a child lies a level of communication that we have never gotten to see from Liam. To see where he wants to go. To learn what catches his eye. To discover where his interests lie.

Last year the timeline was three to four years. Over the summer, after improvements in making choices and showing an awareness of his surroundings that timeline was adjusted.

“He’s ready. At least ready to try it. Let’s see where he takes it.” I was shocked when his PT said it after a particularly good session with his speech therapist and her assortment of switches. “Let’s get him one to practice with in the fall and see.” All of the sudden three years turned into three months and the possibility of a whole new world. A new freedom. A new way to explore. A new way to show us what he wants.

Look out world. Last week Liam got his Learner’s Permit and a smoking hot set of wheels. Just a loaner from the wheelchair company for now, and he only uses at school while we get seat and support measurements to learn what will work best for Liam when the time comes to get him his own model. I’m thinking flames on the side right?

Liam also went to his first professional hockey game last week when we took him to see the Providence Bruins game. Liam absolutely loved it, and someday when he’s using those switches to drive the Zamboni at the Providence Bruins games we’ll look back at this footage as the start of it all.

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Easing back into it.

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Sure, I could make excuses. I could tell you how tired we are. I could tell you how the day job has been busier than normal for the past few months. I could tell you how there really hasn’t been that much to blog about as we have been settled so deeply into our routine. But that wouldn’t exactly be accurate. It wouldn’t be the truth since, to be honest, so very much has happened. Let’s see,

  • School started and Liam has taken very well to being a full-time part of the classroom. He has a special relationship with his classmates and his full-time teacher is nothing short of wonderful.
  • Liam has started to reliably make choices using eye gaze including such things as picking out his clothes every morning.
  • Karin and I got to attend our first Open House at school, our own rite of passage we never thought we’d see. We had our latest and greatest IEP and everything that entails.
  • We started the ongoing process of breaking in a new night nurse in the hopes that someday when she works we’ll actually get to sleep for a full 8 hours.
  • I made two different beers using only the hops that I grew in my backyard that I told you all so much about.
  • And maybe most importantly, The Boston Red Sox won the World Series.

And that’s just the big stuff. That doesn’t even count all the little moments. All the little happenings that were probably worthy of their own blog posts. Making his pediatrician cry showing him a video of Liam in his walker. Being able to ask my parents to babysit for the first time in Liam’s life. Starting to plan for Liam’s FIFTH (!!!!!!!!!) birthday party (January 11th 2014. More details to come. Mark your calendars.  You are all welcome.)

Anyway, I obviously cannot be trusted to assure you that I will post more reliably now but at the very least this post will serve to break the seal. With the pressure of the first post back out-of-the-way I can get back to little updates more frequently.

Thank you all for hanging in there or coming back. I appreciate it. While not blogging I was also not reading or commenting on other blogs. I’ll work on that too.

In the meantime, things here are going well. I hope that all of you can say the same for where you are.

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New Routine

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We go for walks now. All three of us. Everyday.

For the past 7 years I have had to work until 8pm at the earliest. There wasn’t any way for me to go out for a walk around the neighborhood in the sunshine. Then in November I got a promotion and was able to get home by 6 almost every night. A welcome change but being November it would still be another 5 months before I would get to enjoy the feeling of leaving work able to enjoy even a little bit of sun.

I used to come home from work with barely enough time to eat dinner before Liam would fall asleep. Now I come home with hours and hours to play with before bed time. We’ve got a new routine now.

We go for walks.

All three of us.

Everyday.

Fighting Nemo: The Blizzard of 2013 part IV — The Things we Carried.

Wheelchair
1 Adorable 4-year-old boy
1 LTV-900 ventilator
1 Lithium rechargeable battery
1 Portable liquid oxygen tank
1 Pulse Oximeter
1 Portable Suction Rig
Go Bag   —  spare trachs, spare ventilator circuit, ambu bag, nasal versed, gloves, surgi-lube, syringes, sterile water.

Liam’s Backpack
10 5ml syringes, 20 10ml syringes, 10 20ml syringes
All of Liam’s meds (not going to list them all but not knowing when we would make it home again we had to grab EVERYTHING)
Spare G-tube Mic-key button and extension.
2×2 fenestrated sponges.
4×4 fenestrated sponges.
Spare pulse oximeter probe
5 Feeding Pump bags
6 cans of formula
5 Facecloths for catching drool

My Backpack
Charging chord for suction rig
A/C plug for LTV ventilator
A/C charging cord for ventilator Lithium Battery
A/C charging cord for feeding pump
A/C charging cord for pulse oximeter
Additional Spare circuit for the ventilator
2 more cans of formula
1 cell phone charger
My kindle eReader
Karin’s kindle eReader

Miscellaneous Bag (one of those nylon reusable grocery store bags)
1 cell phone charger
4 changes of clothes for Liam
1 feeding pump
2 child sized blankets
5 onesies
2 sets of pajamas

In the Back of the Van
1 case of 24 cans of formula
1 case of 128 diapers
1 case of 100 suction catheters

From house to van. Van to hospital, Hospital to a different hospital. Ultimately to home. Aside from the clothes on our backs, this is everything we carried. In other words, we thought enough about how long we’d be away from home to pack up our kindles but apparently Karin and I never once thought about changing our own clothes, brushing our own teeth, dealing with our own needs. It was never very cozy at all, but at least Liam was warm.

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Listen folks, I know that this blizzard is old news and as I type this a warm driving rain is trying its hardest to erase any evidence from my yard. With the whole thing happening almost two weeks ago, telling this story my way has become more about me (setting/reaching a goal, finishing what I start) than it has to do with you (reading what may ultimately be a boring conclusion to a mediocre story) I’m pretty sure I’ll finish it up in just one more part. Thanks for hanging in there.