special needs

Thoughts on our Halloween

It was actually Easter I think, a bunch of years ago, when Liam’s cousin Max saw us coming up the front walkway at Gramama’s house and bounded towards us with toy in hand. Racing toward us so quickly and at only three or four years old at the time, I could barely understand him as Max pushed the Darth Vader action figure into my hands. 

” the same, the same bleeding machine, he has bleeding machine!” His excitement proving that he had been waiting for us to get there just to show us.

” a bleeding machine?” I asked for clarification, as max let me have the toy and gently grabbed Liam’s hand to say hi to him. 

“No.” Max said and grabbed onto the circuit tubes connecting Liam’s trach to his ventilator. “BREATHING MACHINE.” He said. 

The same. The same. 

Better than even some adults who had met Liam in the early days, it isn’t as complicated as some would make it, his cousins got it. Like it was no big deal.

Darth Vader and his cousin Liam. They both need a breathing machine.

The same.

I’ve always loved that story and that moment, because in Max’s childlike enthusiasm he showed not only that he understood  what Liam needed but also that it was pretty cool.

I’m thinking Liam’s cousin Max would get a kick out of Liam’s Halloween costume this year. 


Darth Liam finds your lack of faith disturbing

Halloween can be tough one for us. Liam doesn’t eat by mouth so candy is out, most sidewalks and front walkways ( in our neighborhood anyway) aren’t wheelchair accessible, and even school has made costumes on Halloween against the rules, opting instead for a “spirit day” where all students are encouraged to wear black and orange, but NO COSTUMES! Either intimidated by the wheelchair ramp or because there just aren’t that many kids in the neighborhood we only got four trick-or-treaters so even making an event of that part of the night doesn’t work much for us. 

Basically, it’s hard not to feel isolated when nearly all aspects of the day do little but highlight how different our life as a family can be from so many of the people around us. Even dressing Liam in costume, an act that is essentially only for Facebook and Instagram, can be fraught with difficulty. 

Long time readers know how important Liam’s dignity and agency are to us. He is a little boy, he isn’t a doll, and so are we dressing him in costume for our entertainment or because society tells us that we must on Halloween. I don’t know. When he was a toddler it was easier. Choosing the right costume for a baby is always more for the parents whether going for adorability or irony (mad men characters? Game of Thrones? Donald Trump?) but at what age do we take into account what a non-verbal Liam wants or does not want to wear? We make it a point to ask Liam to choose his costume, and he does. We ask him if he feels comfortable when he’s wearing it which he generally does, and if he doesn’t it immediately comes off. Thankfully, target has come out with these hooded sweatshirts with a partial mask attached to the hood. Last year Liam was Captain America, this year he was everyone’s favorite Sith apprentice, while wearing nothing more than a hoodie. Awesome. (This is a blog that doesn’t do ‘brand engagement’ for a number of reasons. But thanks for these Target) they’re so awesome in fact that against the rules or not we send Liam to school in his costume anyway. I can’t wait until they try and tell us we shouldn’t have done it. Showing off his hoodie at school is just about the only Halloween thing he can do. 

This year we made the best of it. Unfortunately we spent a portion of Halloween at Liam’s pediatrician’s office (long story, he’s fine) but after that we celebrated on our own. Our way. After his grandparents visited with some little toys and crafts for his goodie bag (in lieu of candy), if I could have added large hinges to the wheelchair ramp and raised it like a drawbridge for the rest of the night I would have. We carved our pumpkins, we baked our seeds, we watched our Bruins (big win!) and soaked in being together as a family. 

Halloween can be a tough one for us. So we just stopped doing it. You guys do your thing with your candy and haunted houses and trick-or-treating, and crazy far out costumes. 

We’ll be at home, in our hoodies, being a family. It doesn’t always look like everyone else’s, and it can be vary isolating. 

But At least we have each other. 

Hoppy Halloween from the Olson & Son Hopyard

9 Years of Being Called Dad.


Nine years ago today. 9:06am. After 13 hours of labor Karin gave birth to Ben Olson.

He had already passed away hours beforehand. We lost him before we ever really got to meet him.

Through our grief on that day, Karin and I appreciated the care, and support provided by doctors, nurses, and the hospital minister as they gave us the gifts of 8 hours with our son. a day to spend in the labor room, holding him, telling him how much we loved him, introducing him to both sets of his  grandparents.

They gave us the time we needed to say goodbye.

But the greater gift given that day wasn’t the grand gestures, the pictures, the clothes Ben was dressed in while we stayed in that room, the footprints in a decorated memory box to take home with us. Those nurses, doctors and other hospital staff gave us what we needed to hear,

They called us Mom and Dad. They gave us the title that we needed to hear.

“You’re doing a great job Mom!”

“Do you want to cut the cord Dad?” and they never stopped calling us that.

Because Karin and I became parents on this day, September 22, 2006. 9 years ago today. We didn’t know at the time that we wouldn’t be able to bring a child home with us for another 2 years and 8 months when Liam was 153 days old, but we knew that we had had a son. His name was Ben and to show him the respect he deserved we needed to believe, as hard as it may have been when walking out of that hospital only with each other, that we were parents.


About a month ago this article popped into my Twitter feed. “Don’t Call me Mom if You’re Not My Child”  written by a mom who took offense to the nurses in a hospital calling her “Mom” while her son was in for an outpatient procedure. It’s been bugging me ever since I read it, but today looking back on Ben’s birthday crystallized why. It’s snarky and angry which I usually like, but is directed at people just trying to do their jobs and help to make people feel comfortable. I know plenty of parents who agree 100% in the sentiment. Parents of neurotypical children and parents of children with disabilities alike. Parents who mean a great deal to me, who I respect a great deal, and who have helped me through some of the toughest of times. Parents though, who all have at least one child who has the ability to call them Mom, or Dad.

Not everyone has that.


Being Mom and Dad to Ben has never been easy. It has been heart breaking, but it has also made us better parents to Liam. After the birth of Ben, along with 4 miscarriages and also an unsuccessful IVF/PGD attempt by the time Liam was born Karin and I were ready. Ready to take those titles of Mom and Dad and grow into owning them no matter the circumstance of our child’s health. During the time while Liam was in the NICU we reveled in being called Mom and Dad by the dozens of staff and personnel calling us by the titles we earned. (If I went through the years of schooling it took to get a Phd I’d be that jerk who wants to be called “Dr.” too.)

As Liam got older and we spent more and more of his life in and out of hospitals it became clear that the ONLY time that Karin and I would ever be called “mom” or “dad” was going to be by the nurses and staff in the intensive care unit. Liam communicates with us in ways that only we can understand, but he’s probably never going to be able to say those words. Programming an iPad to say it when he hits a switch is nice but it isn’t the same. I’m Ok with that. As I said, Liam and I “talk” in other ways. But hearing it from a human voice when they tell us that they were finally able to get the central line in place and Liam had access for the meds he would need to keep him from dying? Or the recovery nurse after any one of his many life saving surgeries? Or the PICU nurse who sat in the room for every minute of her shift because there was real concern that he had a heart attack due to the septic shock?  Yeah, I’ll take those “Mom & Dad”‘s. Any Day. Unlike the author of the article, for some of us, it does take a village. The hands and help of people who have saved my son’s life can be a part of my village anytime< along with the people who brought him his lunch and the people who kept his room clean. There’s room for lots of people in my village.

Nine years ago today Karin and I became a Mom & Dad. I don’t care if you’re my kid or not, every person on this planet could call me Dad. It’s the only title that really matters to me.


Ben, your Mom and I love you and we miss you every single day. Thank you for sending us the messages you send and in the way that you send them. Someday I’ll share our secret with all of these people reading this. They’ll have to buy my book about it first. (although a few of you out there already know what that is. very few) Thank you for being such great big brother and gaurdian angel to your little bro Liam and always watching over him. I know that you know that we tell him about you all the time and he is always with us when we go and visit you resting next to your Great-Grampa.

Happy Birthday little viking. I love you.



He just keeps proving them wrong. 

“I think you should focus on the time you have him with you now because we can’t really say for certain Liam will ever leave the hospital.” 

“Liam will mentally always be an infant, and won’t ever be able to communicate” 

“We might be at the point where we should discuss extubating from the ventilator and letting nature run its course.” ***

There are days that I wish we could track down some of the doctors that have crossed paths with Liam in the NICU and PICU just so that we could tell them “We told you so” 

Dropping this big boy off for his first day of the FIRST GRADE(!!!) this morning is definitely one of them. 


Happy first day of school to all of you students, parents, and teachers out there. 
****Yes, we once had a PICU Attending tell us this after only 48 hours of intubation when Liam was only 6 months old. He said this BEFORE WE EVEN DISCUSSED GETTING A TRACH! I’ve never come closer to punching someone in the face, and I’m thrilled to tell you he no longer works anywhere near here. I’d love to have a chat with him again now. 

Final day for orders. 


photo by Olson & Son Hopyard media director and CFO Karin.

Hard at work brewing beer this weekend here is the Olson & Son Hopyard and Brewing crew, with assistant brewer holding on to the 30 minute hop addition of .75oz of Chinooks. 
Just a quick not to remind everyone that today is the final day for orders of your very own Olson & Son Hopyard t-shirt, until next year. Click this link to order. 
Thank you all so very much for your interest and enthusiasm for our little project. Every t shirt sale helps us not only keep this fun hobby going but more importantly helps us maintain Liam’s medical equipment and needs. 

Your generosity has floored us all and I am so happy that so many of you have joined in the fun. I can’t tell you how much it cracks me up that in about three weeks people all over the country will be rocking their O&SH gear. 
Cheers! And thank you. 

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.


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.




“Hi Mom”


“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.



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.



Picking Our Battles

Editor’s note: Due to a poorly designed web interface from wordpress, an incomplete, incoherent, and unedited first draft version of this post may have been sent to your inbox if you are an email follower to the blog. So if it reads familiar that is why I’m sorry about that, and about the multiple emails from me tonight. please give it another try for me. Here’s the blog as it should read.

The principal of Liam’s school during a very heated and contentious meeting that also included the director of pupil services and the superintendent of school for the city of East Providence (yes, even the supt of schools, you don’t want to piss me off when it comes to giving Liam the services he needs, he deserves, and he has a right to) once told us that she was offended by the fact that she had heard my wife describe our interactions to demand the wheelchair lift that she had promised as “battles”.

My son was being made to leave his school building up to 5 times a day to re-enter through a different entrance to be on the floor where his other classes (art, library, music) during rain and cold weather but she was offended by our use of the term “battle”.

Her solution, as winter quickly approached and there was still no accessibility for Liam and the handful of other students who use wheelchairs in the school, was to put him in the 3rd grade class for those subjects. 3rd grade, for a developmentally disabled kindergartner, because those classrooms were closer, as if he were a piece of furniture. yet SHE was offended that we used the word “battle”.

During the same meeting this principal was caught flat out lying to us about whether or not Liam was already being put into the classroom with third graders without our permission (helpful to have a nurse follow Liam’s every move and texting us when something feels hinky) yet she was offended that we used the term battle.

It was a battle and we told her so again.

It was a battle that we won.

The wheelchair lift was installed over the holiday break in january. We haven’t had to interact with the principal since. I’m sure she’s thankful of that. But the next time we do have to cross paths. that will be a battle as well.

Because when it comes to making sure that Liam gets the services, the equipment, the supplies and even the medicines that he needs, it is always a battle.

One that his mother and I are perfectly suited for, and happy to fight.


The equipment company that takes over 10 months to fix the armrests on Liam’s chair after his orthopedist and physical therapist alerted them that his original rests were unsafe and he was at risk for getting his arms caught and/or dislocating his shoulders during a seizure. After months of phone calls and emails, and not only one but TWO scheduled appointments for an equipment technician to come to the house to fix the chair where the tech was a no-call no-show (with Liam staying home from school specifically for both) the tech finally, on the third try, arrived at our house with parts, only the parts that he brought weren’t the new ones, they were the exact same armrests already on his chair. Then we got to start from the beginning all over again, signatures from doctors, approvals from insurance companies, months and months of opportunity for Liam to be injured with unsafe conditions in his chair. Being blown off by uninterested “customer service reps”

A battle in every sense of the word.

It shouldn’t take a full school year to switch a part on a wheelchair when multiple medical professionals deem it unsafe, but this is the system we fight.

Twelve days ago the armrests on Liam’s chair were finally replaced.Still, after 10 months, I have a hard time calling that battle a win in our column.


The pharmacy that despite knowing that Liam has been on a med for over four years refuses to carry a full refill supply of it. Whether for the saving of shelf space or a refusal to pay for it until it has been paid for by my insurance, every time we call for the re-fill we are given a “partial order”. ‘We can only give you a few doses. Come back in two days for the remainder’ they say, increasing the chance of an error.

Three days ago we were told that they would not re-fill Liam’s prescription. We should have enough for 14 more days the insurance company computer told them, and they would not give us any more until then. End of story.

Or so they thought. Karin can be very persuasive. She has to be. Our sniper of phone calls. Explaining to the poor sap working his part time shift as a pharmacy tech that he was plainly wrong, and that they had to go back and recheck how much volume we were given in our last ‘partial’ fill. That not only would we not take no for an answer, but that we would hold him and his company responsible when Liam would need to be admitted to the intensive care unit the next day because of the withdrawal he would experience if they failed to fix their mistake.

Yesterday they called and explained that they did an inventory of their supply and found that, what do you know, they did owe us 14 days worth of Liam’s medicine. found a whole bottle with his name on it and everything.

That happened this week, but similar situations with prescriptions have happened dozens of times before. Liam takes 11 different perscription medications, Many of them in large volumes that for some reason this enormously recognizable corportaion refuses to keep in stock. The battle against incompetence is very real.


The medical supply company that provides Liam’s everyday supplies like trachs, trach ties and vent circuits, suction catheters and feeding pump bags, pulse oximeter probes and fenistrated gauze sponges. All the things that keep Liam in his home and not in a hospital but that you can’t just roll up to your local megamart and buy if you run out of them. Again, if we run out of many of these supplies our recourse for keeping Liam alive is a trip to the hospital until we recieve these supplies, so you would think that a person going on vacation or leaving the company for another job wouldn’t put my son at risk but of course, you’d be wrong.

Because even if these companies cared about the patients that rely on them (which they don’t) the patient is not their customer. The patient’s insurance company is and as long as those reimbursement checks and approvals keep coming in, they can and will treat their patients like garbage. Including sending out Liam’s monthly order of necessary items with invoices showing that they have been paid for, but many of the items just happen to be on “back order”. Nearly every other month, when we are washing and reusing what should be disposable felt ties that hold Liam’s trach in place at an exposure point for infection, it gives me such comfort to see that the company has already received the funds for those products. Essentially removing the motivation for them to rush those type of products out to us.

The patient is not their concern, their shareholders are, the insurance companies are, medicaid is. But make no mistake, it isn’t my son that they care about.

So they don’t like hearing my voice on the line, every month when we run out of the things that keep Liam alive. Where Karin is our sniper in battle over the phone; I am our nuclear bomb.


The oxygen delivery service that brings Liam his oxygen every other week decided last month that instead of delivering on Thursday they would be switching our delivery day to Tuesday. I shouldn’t be the one who has to point out to them that if you are changing us from thursday to tuesday that you have to make that change on the tuesday BEFORE the normal thursday delivery, or else we will run out of oxygen. I shouldn’t have to be since you would think the dispatch and delivery department for an oxygen delivery company would understand that people’s lives rely on them doing their job correctly.

You would think that, but you’d be wrong.

The job doesn’t get done correctly without a fight.  Without a phone call. Without a battle.


School departments, insurance companies, medical supply and equipment companies. “Partners” in care. They arm themselves with bureaucracies, with paper, with seemingly automatic denials only to approve to anyone with the audacity to appeal. (how many people get an insurance denial and don’t think they can appeal? The math must work out in their favor.) They defend themselves with red tape, with their “policy”, with the incompetent at best and inconsiderate and uncaring “customer Service reps” at worst, and every single time, it puts my son’s life in danger.

Which is why we fight. Which is why we arm ourselves with emails, and phone calls, and documentation. It’s why I can be such an asshole on the phone. We fight incompetence with aggressiveness.

And we always win.  We have to.

Our son’s life depends on it.

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.



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.


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.


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.




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.


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.


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.


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.


All I Ever Wanted

And so maybe it wasn’t the best idea to announce my triumphant return to blogging the day before a ten day vacation from the day job. 

I know that none of you people come here to hear about me. It’s all about the boy and it should be. 

Over the next day or so I’ll finish the big post of a photo dump along with highlights of the year so far, but tonight I still feel like celebrating the fact that I don’t have to got to work for the next week. This is the first vacation time I have taken in over a year that wasn’t used to attend a conference, or give a speech, for my part time “job”, and by the side eye glance I’m getting from Liam in the photo, I think he’s already tired of me being home.

So instead of finishing that post, tonight I’m going to sit on the couch between my wife and son. I’m going to watch something funny on television and I might even enjoy a beer or two.  

Best Monday in a long time. 

A quick visit.


It always happens so damn fast. After an amazing Saturday afternoon which included a visit from New Jersey by Liam’s grandparents, dinner out at one of Liam’s favorite restaurants (of the two he’s visited), and a visit to one of our favorite places in all the world, the Roger Williams Park Zoo. It was Sunday that started with Liam having a weird shivering motion we’d never seen before and a rising temperature. Some Tylenol and Motrin, and a quick call to his pulmonologist’s nurse practitioner just to give her a head’s up, things seemed to resolve using Liam’s sick plan (The sick plan is a series of ventilator changes and nebulizer treatments given at our preditermined increase when Liam isn’t feeling well, Waiting until an illness arrives is the wrong time to come up with a plan for how to treat it with a kid on a ventilator.). Reaching a high of only 101.3 in the afternoon, by the time we got Liam to bed at 9:30pm he was sitting at 98.8 and we thought we were out of the woods.

It was 11:18pm when we went in to check on Liam. Now, with his temperature rising, the shivering motion that resolved so quickly in the morning was present and stronger. His rate of breathing was about three times what it should be. By a quarter to 12am we were calling 911.

By my count 5 of the 6 EMT’s and firemen  who responded have been here before Sunday. The holdout looking barely old enough to drive. The blood rushing from his face as he walked in and took in the tubes and chords across a little boy’s bedroom. He watched as we changed Liam’s trach and looked for a chest rise and listened through our own stethescope, listening to see how well he was moving air just in case the respiratory problems were from an occluded trach. I would have laughed at him if I wasn’t busy rushing out of the room to get the Liam’s suction rig ready for an ambulance ride and making sure the med list saved in my phone was current, while Liam Karin got Liam, his ventilator, and his oxygen tank ready for his transfer to the stretcher.

It’s been a few years since we’ve had a sick visit to the children’s hospital. We’re out of practice. But back into our roles we all fell pretty easily. Put onto the Servo Ventilator ( a huge hospital-only piece of equipment) in the ER and for it only taking three tries in three different veins on three different parts of his body to get an IV access (it usually takes many more), Liam almost immediately looked to be breathing better. Against the doctor’s wishes (“that’s not the priority right now!” she yelled at the nurse) the impressive ER trauma room nurse caring for Liam, was able to get the blood needed for labs before taping the line onto Liam’s bicep. That line would miraculously stay flowing and give them a place to administer IV antibiotics, until we left yesterday afternoon, and while she tried to get it while getting yelled at by a Dr. I cheered her on the whole time as if she knew that Liam being such a hard stick, if she didn’t get the blood from a vein then, it would probably take an OR procedure later to do so and not blow the line for access.

By Monday afternoon Liam actually looked pretty comfortable. Sleepy for sure but his fever controlled again by tylenol and motrin, the new Nurse Practioner of the PICU who we had not yet met, seemed more than a little surprised and a bit put out that even though he was back on his home vent and his numbers seemed to be ok, I refused to let her ask Liam’s pulmonolgist and the PICU Attending Dr. to let us go home that afternoon.

“Parents don’t usually ask to stay here another day sir, his numbers have been very good.” It was clear her plan was to get us out of there as soon as possible. Karin and I gave her the reasons why we flat out refused to go.

“Even though he looks fine now, we haven’t gotten any answers as to what happened to cause him to get here. We made subtle changes to his vent settings only a few hours ago!  We don’t know yet if he’s going to tolerate them while he’s awake and breathing normally?! Lab cultures haven’t even come back yet, we don’t even know what his high white blood cell count in the ER was fighting off. No. We have gone home and then had to turn around and be re-admitted before, we aren’t doing that again. No. we are staying one more night to see if he really is doing better.” I said.

I’d be lying if I didn’t get just a bit of satisfaction when she had to come back only a few hours later and explain that his blood cultures grew out strep pneumo probably causing the fever and the pneumonio symptoms in his difficulty breathing the night before, and that while we wait to see what antibiotics this bug is most sensitive to, if we had gone home when she offered, she would have then had to call us back to be re-admitted through the ER for IV antibiotics. We were right. It was a good thing we hadn’t left.

The wait was kind of brutal. Liam really was doing much better. But that was because of the Cephtriaxone. If there were an oral ( or a non-IV administered version) of that antibiotic we would have been home on Tuesday. Instead, we were forced to wait until the lab got true drug sensitivities of this particular strain. Apparently different strep bugs all over the country are more or less sensitive to different antibiotics.

“Why haven’t we just tried good ol’ penicillin? We used to always treat strep with Penicillin.”  the attending Doc relayed at morning rounds on Tuesday. Having known Liam most of his life though (and spending one entire night a few years ago never leaving his room as she ruled out whether or not he had had a heart attack due to the sceptic shock just ravashing his blood pressure. Don’t worry. He didn’t) she added, “well I guess there’s no need to get cavalier about it though, this is Liam. Better wait on the Lab. One more day.”

By Wednesday morning’s bedside rounds, the lab sensitivities were in… We knew if we had an oral version of the antibiotics allowing us to bring Liam home.

It was penicillin.

Good Ol’ Penicillin.

It was time to go home.

We are all at home now, but It’s been a long week. A week of sleeplessness and worry. But also a week of bragging about the boy. Bragging and visiting with people who have spent time with Liam at his worst. People who have been there to help save Liam’s life multiple times, but don’t get to see him use his ipad. People that care for him for weeks post surgery but not for the weeks post Santa visit.

Like the proverbial pebble thrown into a lake, Liam has touched so many lives. Part of being Liam’s parent is knowing that every now and then Liam will decide it is time to teach a med school class to a rotation of new residents. To open the eyes of a brand new EMT.  To reach out to a nurse he may have taught something to in the past (one of his nurses this stay learned how to change a trach on him  a few years ago, the last time he was admitted, and under our supervision and permission.), or to teach a Nurse Practioner that maybe listening to the patient (or his parents) is just as important if not more important than what the numbers say.

We’re all at home now, and it has been a long week. A week of sleeplessness and worry. But I did so much bragging about Liam, and he visited with, so many people who have known him for as long as he has been alive, people who have helped him through his very worst times.On top of that, Liam met new friends. Friends who will go out into the world feeling the positive energy of meeting a charming boy like Liam and bringing that into their careers as nurses, and doctors and respiratory therapists.

We’re all at home now, and it’s been a long week. A week of sleeplessness and worry.

But on some weird level, and this is only because aside from the few hours in the ER Liam was basically comfortable the whole time,  I can’t say it hasn’t been a little bit worthwhile.


The games we play. 

Liam doesn’t go in for most game-play. Games that require speech, coordination, or mobility just aren’t Liam’s thing. But eye contact with daddy? That Liam knows very well, and since he’s been old enough to swing his head from one side to the other we have played our own game.

We start facing in opposite directions until either one decides to swing all the way around to smile at the other. Wait too long and don’t meet his eye at the right moment? Well no smile for you and we swing our heads back around to start over. Synchronize head swings and meet in the middle at the same time? Well then you get the prize of Liam’s joy. 

We’ve been playing this game most of Liam’s life, but tonight’s match when I got home from work was a real barn burner. 

We both won.