Ink.

There may be tens of thousands of drawings, illustrations, paintings, and tattoos of lions on the internet, yet it still took me almost 5 years to find the right one. Either too fierce, with open snarling mouth in full roar, or too cartoon-y, held up by a monkey as the circle of life surrounds the cub, what I was looking for needed to show strength without ferocity, innocence without over-sized Disney eyes. It may have taken me 5 years to decide on a design, but I’m pretty sure I got it right.

Liam’s neurologist, Dr. G., asked about my tattoo at his appointment this afternoon which is probably why I thought to write this post. I get asked about it all the time. It’s why I put it on my forearm, as conversations about my tattoo always, ALWAYS, turn into conversations about my boy. A feature not a bug, that was totally  by design.  Dr. G is probably the specialist treating Liam that I admire the most. He is brilliant and kind, he takes the time to make sure that we discuss all avenues of treatment. Liam was only three weeks old when he met Dr. G, he is the only doctor we have ever met who has treated another case of Miller Dieker Syndrome and, long before meeting us, Dr. G had started a clinic focused on lissencephaly in Boston, so he came into our lives with special expertise seemingly hand picked to treat Liam. Needless to say I was beaming with pride today when this man I admire so much had asked about this tattoo. Even more so since he seemed to love it.

But there’s also a part of this tattoo that I don’t talk about whenever it comes up. A part that is just for me. This piece was paid for with the cash prize I was given as the recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care by the Women and Infants Hospital. Not only is my forearm a physical representation of Liam’s nickname from only days after his birth and an illustration of his amazing strength, it is a constant reminder of the value and importance to sharing our story with the world. A mark identifying the calling that raising Liam has brought me to, in speaking and writing and volunteering to help not only families with children who have special needs and disabilities, but all patients and their families of the hospitals I work with.

Admittedly, it’s a lot of pressure and meaning to put on some ink under my skin.

But that’s just it…. All of my Ink, Means something.

 

*************

“We should get tattoos today.” Karin said nonchalantly as we strapped little Liam into his carseat in the parking lot outside his pediatrician’s office 5 years ago. ” He just got his flu shot AND his 1 year immunizations. Poor kid just got stuck with four needles. Don’t you think we should get stuck with some too? Besides, that shop in town has a sign that says twenty dollar tuesdays for any words 5 letters or less.”

” Ha! yeah, good idea, that would be great.” I said waving her off and assuming we were joking, especially since I was due to be at work in less than an hour. “yeah, let’s get tattoos.”

A few hours later while at work I received an email. A photo of a wrist. A wrist with my initials in black. The subject line of the email read, YOUR TURN. After careful consideration of whether or not I was looking at sharpie ink on skin or tattoo ink in skin, I made up my mind to make a quick stop on my way home from work that night.

Now I know what everyone will say about tattooing names and initials on each other, because they all said it. I have more than one friend with big black tattoos that didn’t start out that way. Tattoos that had to be covered up when things fell apart, but after all that Karin and I had been through in the years it took to start a family, even if the unthinkable happened, I would be ok having a reminder of that part of my life on me, so of course if she got tattoo’d that day I had to follow suit.

“I think one of you guys tattoo’d my wife this afternoon.” I announced loud enough that all three tattoo artists could hear me from their stations as I walked in to the shop.

“Ah, you must be E.W.O.” a big guy dressed in all black said looking up from his drawing table. ” You know, she made a joke that she wasn’t 100% sure that you’d have the balls to come in tonight.” he said laughing.

I put a twenty down on the desk and started rolling up my sleeve. “Well then I guess now I’m just here to prove her wrong.”

 

And, not a day goes by that I’m not glad that I did.

**********

It was a simple little ornament. Probably only 2 inches long, with red ribbon through an eyelet at the top. A pewter viking made in sweden and given to me by my aunt for our Christmas tree the year before. Given my Swedish heritage, (my great-Gramma Olson was born in Sweden, coming over in 1903) I liked that ornament so much that I hung it on a shelf in our living room year round. Until I took it down on the morning of July 22 2006 (nine years ago yesterday), and slipped it into my pocket. After a long, hard fought battle with cancer, my grampa had passed away the night before.

For the next 2 months and 5 days that little viking ornament became a talisman of sorts. In my pocket at all times, I would rub it with my thumb when I needed to, and in those 2 months and 5 days I needed to.

Only a few hours away from exactly 2 months after my Grampa passed away, our son Ben Olson was born and passed away. Karin and I, along with my parents and her parents were given about 8 hours to be together with him. To hold him. To tell him we loved him. To let him and ourselves know that he was a part of a family.

I knew that day that my first ever tattoo would be for Ben, but I also knew that even though it wouldn’t be like that little ornament,  it absolutely could only be of one thing.

My first tattoo,

Ben’s tattoo,

It had to be of a viking.

 

Wracked by grief and sadness, in the few days between Ben’s birth and his funeral I rubbed that little viking ornament between my thumb and forefinger so much that it began to bend and the detail wore off. Afraid of losing it forever, I put it back on the shelf. It still comes out every Christmas to adorn our tree. Their deaths coming so close together, and both so closely ingrained in my mind, Ben is laid to rest next to my Grampa which has always given me great comfort.

The littlest viking sleeps with my big viking.

And he always will.

A few months later, Instead of an ornament in my pocket, I put my heritage and my fatherhood to that point on my arm. Where he’ll always be with me.

**********

I get that tattoos aren’t for everyone. I have more than a few extended family members who aren’t fans at all. That’s ok.

To me (so far), as you can plainly see, my ink is a representation of what’s important to me.

It’s a mark of my family.

And I am so happy that they are all there.

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.

WordPress Issues

In their infinite wisdom the brilliant minds at WordPress believe that they have come out with a great new way to create and enter posts for publishing to your wordpress blog. The problem though is that the interface is crap and while the sidebar of the window will scroll down the main part of the page does not move. The Publish button on some programs, Chrome to name one, hidden into just a tiny little sliver on the bottom of the screen. When inadvertently pushed  in error there is no recourse and so my unedited ramblings then get sent off to all of the followers to this blog, no doubt alerting all of my readers that I have forgotten how to form coherent thoughts or paragraphs.

So thanks for the great new way to create posts WordPress! Now when I try and delete the crappy post I wasn’t ready to publish to the public I’m getting an error message that you’re having problems moving my post to the trash.  Even better.

Just when I was getting back into this blogging thing.

If you recieved an email post from me a few minutes ago, please disregard it. I haven’t yet decided if I have the energy to go through and finish it now. I’m a bit frustrated.

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?

*****

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.

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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.

 

Let’s Go Fly a Kite

I remember flying a kite as a kid. I also remember crying when inevitably the string would snap, or the kite would get stuck in a tree. So even though I don’t remember kite flying being the most fun I’ve ever had, it was something that all kids do.

 

Or so I thought.

 

So when Karin mentioned over breakfast that she had never flown a kite before, our plan for the day changed.

mom and liam

Karin and Liam were both going to fly a kite for the first time in their lives. I on the other hand, and without expecting to, was going to have more fun doing a basic childhood activity than I thought would be possible.

 

liam kite flying

And that’s just what we did. Getting these awesome photos was just an added bonus.

Family kite flying

Don’t worry. I’ll still get to the highlights of 2015 post.  Today was just too much fun NOT to post about.

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. 

It’ll Be Just Like Starting Over

I’m not sure where or when, but I lost it.

Sometime in the last year I lost my voice.

Not my speaking voice, as can be evidenced by my presentation at Hasbro Children’s Hospital for Pediatric Grand Rounds with the Brown University Medical School in January, or in March when I spoke in front of almost 400 social workers and case managers at the New England Fathering Conference. No, my speaking voice is just fine.

Not my advocacy voice, as this year I was elected to serve as the co-chair of the Hospital Wide Advisory Council for Patient and Family Centered Care at Women & Infants Hospital, along with my post on the Board of Directors at RIPIN. On top of that I spent the first three months of the year working every Saturday with the LEAD (Leadership, Equity,  and Advocacy for Dad’s) Speakers Bureau through the Children’s Welfare Institute at the Rhode Island College School of Social Work crafting our stories with other dads to lead policy changes in the health care, family court, and child support systems.

And after two paragraphs like those, it obviously isn’t my ‘bragging about myself’ voice that I can’t seem to find.

It isn’t even my writing voice. I’ve been doing plenty of writing, you’re just going to have to wait a while and pay anywhere from $7.99 to $15.99  in order to read it in book form someday (hopefully).

No, it’s my blogging voice that I lost.

But I’m determined to get it back.

Determined to make this work again the way I have in the past because you know all of those things I bragged about up in the beginning of this post?

Yeah, well none of those things would have even been possible without this blog. Sharing Liam’s story, our story, and listening to you, all of you, in your comments and emails, and tweets, has been the only thing to give me enough confidence to stick my neck out and claim to have any expertise on something, for the first time in my life.

So until I can get back into a rhythm, I’ll start out small. There will be some short posts I’m sure. Maybe it will be a while before I’m back to big long 2,000 word essays again. Sometimes it might even be only a picture.

But there will be posting again.

Because lately I’ve been feeling guilty that I’ve abandoned this space that helped me find my true passion and calling for public speaking and advocacy. Because lately I’ve been feeling guilty that I have “abandoned” so many people who care about Liam and want to hear how he is doing now that he has finished kindergarten (!!!!!).

Because lately I’ve been feeling so guilty that NOT posting has become harder than regularly posting ever was.

Thanks for reading again.

It’s time for me to get my voice back.

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. 

My Bona Fides. 

Yes, I am the Eric Olson in the article, and yes I am the 2014 non-clinical recipient of the Richard P. Welch Award for Continued Excellence in Patient and Family Centered Care, and yes the reason I’ve started writing for, and posting to, the blog again was because last week when I was told this was printed in my hometown newspaper the East Providence Post, I wanted to make sure that I didn’t make a liar out of whoever wrote “He regularly updates his blog,” since they were right about everything else in the announcement.

Yes, I won an award. I’ve never won an award before, and I am really proud of this one. Even now, a month and a half after being presented the award (and that was a month after I was told I had been selected the winner), I am still kind of amazed and speechless that I was even considered for this honor, and there are a bunch of different reasons why.

1. Reason the first (not in ranking of importance, just a listing). This award, as the article mentions and as Mrs. Welch noted in her speech during the presentation in January, was not about my work, at my “work”. Yes I work IN the Women & Infants Hospital but I work FOR (meaning who signs my checks) a large management subcontractor managing the kitchen. I am decent at my position but in my day job I have little exposure to the care of our patients other than providing safe and tasty meals while they stay with us (although, as I tell my staff, whether or not you have direct patient contact, ALL hospital employees impact patient and family centered care). Instead this award was for my work on the hospital wide advisory council for patient and family centered care, where the perspective I bring is more often as the father and husband to former patients, rather than a department manager. It was for my presentations and speeches to Pediatric Grand Rounds, and the Follow-up Clinic conference on NICU dads.  It was about the work I did attending the Institute for Patient and Family Centered Care National Seminar last year. It was about the work I do sharing Liam’s story with you. Right here. Because without this blog and all of your responses to it, I don’t think I would have had any idea that Karin and Liam and I had a story worth sharing, a point of view that had any value, or that our experiences could help people and systems of care for anyone else out there with a family member with complex medical needs.

2. The second reason that this award is so cool and I’m so proud of it is because it isn’t just about me. I of course would have no story to share, No motivation to help, and no confidence to stand and speak were it not for my amazing wife and this incredible little boy that we are lucky enough to have in our lives. I often say at my speeches that I had never been able to speak in front of groups before Liam was born but get me bragging about that kid and I could speak to hundreds, Thousands! And I would do it for hours. I’m not the award winner, we’re an award winning family.

3. Third, the award came with a little money, and as soon as Karin heard that she insisted that I use it to get something just for me. Not to use it all for heating oil and car maintenance but to splurge on something that I’ve been talking about getting for the past 6 years but could never justify the expense. Even though most of it did go to those bills, I was able to save enough for my own award and it means so much to me.

Finally I was able to get my next tattoo. And every time I look at it or show it off I remember where the money for it came from.

If you need a tat in Rhode Island go see Greg Arpin at Unicorn Ink, he does incredible work. This came out better than I could have imagined. Works out pretty well when your kid has a badass nickname.

 

4. But I suppose the biggest reward of receiving this award is that I’m beginning to actually believe that I am an advocate. That I’m legit. Ive got my bona fides.

The award is knowing now that I can do this. Not only because it’s what I am so passionate about, but someday, if I can figure out my way in, because someday it will be the way I make my living. This award is recognition that I am on the right path for that.

Recognition that I have a story, the skills, and now the confidence to tell it, only it isn’t my story,

it’s Liam’s story.

I’m just the guy who he awarded the opportunity to tell it.