dadblog

9 Years of Being Called Dad.

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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.

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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.

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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.

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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.

Dad

 

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.

 

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“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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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.

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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.

 

A quick visit.

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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.

*****

Liam meets Santa

For almost ten years I’ve called Evelyn a friend but I suppose acquaintance would be more accurate. Walking past her desk every morning on my way to my own our talks would range from 15 second hellos to 20 minute complaint sessions about the Red Sox. She even took these photos, as we passed her desk on the day Liam was discharged from the NICU. (I wrote about that day and these photos here.)

For ten years I’ve called Evelynn a friend. After yesterday, and what she and her family did for Liam, I feel like I should call her family, and I don’t know if I’ll ever be able to thank her enough.

*****

“Hey Eric, have you taken Liam to get his picture taken with Santa yet this year ?” She asked, the beginning of last week, as I made my way into the office.

 

“Hmmm, No. Actually Liam hasn’t ever met Santa Claus yet, we just can’t wait in a germy line of kids at the mall or anything. Someday though, and he’s almost 6 years old now so soon I hope.” I explained, but Evelynn asks about Liam every day. She knows the deal.

 

“PERFECT!!” She shouted ” what are you doing next Saturday? You have to come to my sister’s house.” She picked up the phone in front of her and held a finger up to make sure I didn’t walk away. “Yeah, it’s me, what time on Saturday? Liam is going to come….. Liam!, that kid I was telling you about. His family is going to come on Saturday. Ok. I’ll let him know.” She hung up the phone and that was that. On my way into work on a monday morning I somehow had made plans to go to someone from work’s sister’s house for dinner on Saturday night. And I still wasn’t exactly sure why.

Evelynn had to explain.

If we came to her sister’s house on Saturday night, Liam would finally get to meet Santa.

******

Evelynn’s sister’s family had had her own children’s pictures taken with Santa and Mrs. Claus at a local restaurant from when they were infants until they were in college. With all the kids home for the holiday this year they had hoped to continue the tradition with a picture of their nearly adult children but the restaurant now closed leaving them without a place for Santa to see them this year. Until Evelynn’s sister had run into Mrs. Claus somewhere shopping. Mrs. Claus explained that Santa would be happy to stop by her house to take the picture, and a date was set. Plans were made.

Santa was coming, and by Evelynn’s thoughtfulness, and her entire family’s boundless generosity, it turned into one of the most magical evenings of my life.

We arrived a little early, and after getting Liam’s chair up the portable ramp we travel with, introductions were made. Introductions made so warm and comfortable that we were instantly set at an ease of familiarity among a group of strangers and one acquaintance. No one asked about Liam’s chair, or his syndrome, or his wheelchair, but each and every one of them pinched his cheeks, and said hello, and told him how handsome he was. A house filled with relatives and lifelong friends who instantly treated us as one of their own.

And when they all heard that Liam had never before met Santa Claus, the entire party seemed to change from a oppurtunity for them to relive old family traditions to a celebration of their part in starting a new one for us.

*****

And then Santa arrived and met Liam.

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Along with Mrs. Claus and their elf helper Tiny, Santa was able to stay for about 45 minutes. He sat, holding Liam’s hand and whispering in his ear for easily 35 of them. Concerned that we were monopolizing Santa’s time too much, many in the room with their own camera’s firing away and with joyful happy tears in their eyes waved away my concern telling us and Liam to take as much time as we wanted. They would ultimately get their own pictures taken but their patience and interest in being a part of Liam’s first exposure to Santa was truly a testament to the power of the Christmas Spirit as hokey and Charlie Brown Christmas as that may sound.

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Liam had slept for almost 22 hours that day. A rough end to the week with seizures induced a medicine change on friday night which wiped him right out for most of Saturday. Most but not all, for when St. Nick was whispering in his ear and holding his hand, Liam was wide-eyed and alert, engaged in communication and tugging for dear life on Santa’s beard with his free hand. Liam won’t tell me what they talked about. He won’t even tell me if Santa told him if he’s on the nice list or not. Whatever Santa had to say to Liam will always stay between them. I like that.

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After Santa had to leave and get back to his busy week-before-Christmas schedule, we stayed and we ate dinner and we got to know everyone a little better. When they found out that Liam’s birthday is the day after Christmas the whole group of our new friends sang Happy Birthday to him. We left happy and to invitations for future plans including a repeat holiday visit next year if possible, and as we made our way out the front door and down the ramp the first snow of the season here started sticking to the ground.

It was downright magical.

The magic of friendship, the magic of a kind and open-hearted family, and the magic of Liam’s positivity and love.

But, I think most of all, it was the magic of Santa.

 

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Somewhere in the Swamps of Jersey

Ok, not the swamps, instead the rolling hills of northwest New Jersey but if you think I’m not going to quote The Boss when talking about our trip to Jersey well then you just don’t know me at all.

Yes the Olson’s packed it all up and headed south for adventure. When I say packed IT ALL up, I mean it. It makes little difference if we are going camping or visiting family in their home, the packing remains the same. 2 days or 2 weeks and there’s little difference to the list. A CVS, across the street from a Walgreens next to a Target a short walk from where we’re staying? Ha! find me syringes, feeding tube bags, ventilator circuits, or  nebulizer parts on any of their shelves and I’ll eat my hat. No, the whole kit and caboodle needs to make the trip when we travel.

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Actually, make that the whole kit and caboodle . . . times two. Because ventilators malfunction. Ventilator batteries lose their juice. Electrical chords and plastic oxygen tubing can all fail. At any time. We have to be ready.

Ready for anything. Twice over.

At all times.

And so we are.

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The trip was great! We visited with family we don’t see often enough, ate good food, and had a relaxing few days away. We even took Liam to another zoo.

 

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For his part, Liam was wonderful. He endured the ride as well as could be expected considering it was RT 95 through Connecticut. He was well-behaved, turned on the charm for his grandparents, and aside from one late night with an increased heart rate that worried us until we realized it was just gas, stayed spectacularly within his baseline sats and numbers. In a new environment in a mostly climate controlled (dry) facility and only recently making a full transition off of supplemental oxygen these are not small details. I’ll be the first to admit that I get a bit nervous travelling and being away from my bubble. It makes me so proud to see how well Liam travels.

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I hope he keeps it up. Because along with our wonderful trip out-of-town for a few days last week, at the end of my vacation from the day job I was approached by the nursing company that supplies Liam’s home nursing care. It seems they had representatives at the conference where I spoke last month and would like to send us all to Pennsylvania so that I can speak to their national meeting of all of their pediatric nursing directors (they have offices nationwide). Details still need to be worked out so I don’t want to say too much, but they want me to speak and I really want them to hear me, so it looks like our trip to New Jersey was just a dry run for a greater adventure.

We’ll be ready.

Ready for anything.

 

 

 

 

 

About a Beard

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Father’s Day morning 2014

Because it’s recently become a FAQ (frequently asked question) and everyone, from co-workers to complete strangers in the grocery store, has a theory on the reason for its existence it’s time to talk about the beard. It isn’t about fashion, it isn’t about trends. It’s not about the hockey playoffs or even the 20013 Boston Red Sox. In fact the beard has only ever been about one thing.

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Fatherhood.

While I can tell you exactly when I started growing this beard, May 29th 2009, our story starts many years and many beards before that. In fact, Karin and I weren’t even married yet. I don’t remember if it was a specific individual or a tradition for her whole family, but what I do remember Karin telling me was that someone in her family would grow a beard whenever his wife was pregnant. For some reason I thought that was just the coolest thing in the world and it was then, years before we were even married, that I filed that little tidbit away and decided I would do the same. Sporting a goatee for as long as I could grow facial hair I decided that a full beard was something I would save. Something I would grow, only as a family man.

Only as a dad.

Or at least as a dad-to-be.

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You can only break your own parents’ hearts so many times, and so after our second miscarriage and my second beard, Karin and I decided we were going to stop telling our families when we were pregnant.  The only indication would be the red scruff on my face and neck.  After two more pregnancies, which many of our extended families didn’t even know about, the act of shaving off my beard after each pregnancy got to be more and more emotional.  Lost in a fog of grief I can’t recall whether I shaved when we lost Ben before or after his funeral. Grief can do funny things to a person. It can cause emotional attachments to our most routine actions.

Like shaving.

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My father had a beard when I was growing up, and as far as I can remember, his father, my Grampa had a beard my whole life, until he got sick. In Karin and my struggle to start a family, and grasping towards any notions of fatherhood that I could find after losing Ben, I kept a partial and trimmed beard for about a year. Never long enough to become a problem at my job in food service, I would keep it short and shave most of my cheeks and neck in an attempt to keep the emotional turmoil of not being a father at bay. Shaving was the only thing that I could control.

A true surprise in so many ways, Liam didn’t give me much time for a pregnancy beard, so just when it was getting started it turned into a NICU beard. Abandoning the plan to shave once we had a baby, the plan became shaving only once we took home a baby. There’s a pretty big distinction between the two.

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Yes, an unhealthy emotional attachment to that hat also happened in the NICU. A Christmas gift made by my Nan, the day before Liam was born.

I kept things trimmed at first in the NICU. Until Liam’s due date. March 19th 2009. For many families with premature children the due date is the goal date for discharge from the NICU. On Liam’s due date (my Mom’s birthday, which is how I remember the date) we were still far from certain that Liam would ever come home. From that day on, if Liam is admitted to a hospital I will not shave, I will not trim, I will not even get a haircut.

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When you spend the first five months of your child’s life watching nurses take care of their every need you can begin to question your role as a parent. I did. No matter how many hours logged in a rocking chair next to the crib. The only thing it seemed I could do to show that I was being a father was to make damn sure that I looked like a father. Apparently, to me a real father looks like he’s been stranded on a desert island for a while. Hence, …

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The day before my last clean shave.

 

But again, that was a different beard. That was a beard born of fear. Born of worry. That beard was shaved completely off on May 29th 2009. For the first time in my life, it wasn’t just shaving, it was a celebration. May 29th 2009, the day after Liam was discharged from his 153 day stay in the NICU. Karin and I had taken our baby home, and I was finally free to shave it all away. The scratchiness, the mess while eating, the references to Grizzly Adams. It could all go away now. I have one picture of me holding Liam clean-shaven. You won’t ever see it. I don’t like it.I didn’t like it as soon as I had put down the razor. The journey to begin a family had changed me. Showing my baby face doesn’t suit me anymore.

May 29th 2009, the last day that I have ever been clean-shaven. 12 days later Liam would be admitted to the Hasbro Childrens Hospital PICU for a 109 day stay.

A new beard was born. A beard built for all that could be thrown its way. A beard built for the father of a child during his tracheostomy and bowel resection.  For 109 day hospital stays, more than a few 40+ day hospital stays, and for too many ‘less than 10 day’ hospital stays to even count. A beard built for seizures. To tickle Liam’s forehead and cheeks so that he knows that everything will be alright. A beard built so that Liam will never have any doubt when Daddy is here.

Dancing the Bowell Blockage Boogie

It has seen its fair share of shapes and sizes now but the beard has endured. My own (until now) private show of my dedication to being a father, and at this point I’m unsure if I’ll ever be able to get rid of it, as ridiculous as that may sound. I got my haircut about a week ago. The woman cutting it remarked about how drastic I had decided to cut the hair on my head and asked if my son would recognize me if I went that short. “Nah, he probably won’t even notice. But if I were to shave my beard off I’m not even sure he’d recognize me.” I told her. Were I to approach him without speaking, that might even be true. I don’t think I ever want to find out. Liam’s dad was meant to have a beard.

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Daddy’s Home!

I’ll be the first to admit that the beard has gotten pretty long these days and I really don’t know why that is. I’ll probably trim it down a bit soon, but not nearly as short as some people would like.  I work in food service remember and I’m sure that if she had her druthers my boss would prefer a clean-shaven kitchen manager. After a lifetime in the industry I completely understand that and don’t blame her. What she didn’t count on though, was my willingness to look a bit foolish while at work in order to look a bit more (in my mind) like a father when I’m not. It’s too bad for her I finally found a distributor for these. . . .

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And that’s the story of my beard. It’s very possible that my attachment to it is irrational. Unhealthy even. I don’t care.

I’m a dad now. And Dad’s have beards.

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At my house right now.

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Karin is asleep in our bed.

Liam is asleep in his bed. The gaseous results of his recent formula change rumbling over the baby monitor to the living room and wafting their way across the whole first floor.

I’m on the couch. Listening to Liam’s breathing (and farting) pattern over the monitor and laughing to tears at old Cheers episodes.

1:30am on a Wednesday. It looks a lot like any other night at 1:30am at my house.

Smells the same too.

He’s lucky he’s so damn cute.

Getting back to why I’m here.

At the end of June the Women & Infants Hospital Community Partners Workshop will be holding a conference called Dads and their Families: The Struggles, Triumphs & Supports of NICU Dads. I know this because I have been asked to be the event’s keynote speaker. It’s my first paid speaking engagement so if you were hoping to grab me to speak to your group or organization you missed your chance at getting all this for free. Now it’s going to cost you.

Later in the program I have also been asked to sit on a panel alongside area experts and staff from the state DCYF, and non-profit agencies. The panel is focusing on resources for dad’s. Oddly enough the event’s organizers don’t want me there to speak as Liam’s dad. They’ve made it clear, for the panel they want Eric Olson, writer for PressureSupport.com.  I’ve officially done it. I’ve fooled you all into thinking that I actually know what I’m doing. Ha Ha!

****

When faced with the decision to have Liam trached, Karin and I were understandably terrified, but we knew the science. We knew all the medical reasons, and the surgical reasons. Pulmonogists and respiratory therapists alike had already commented on our understanding of the issues that Liam faced to get home. We knew it was the right thing to do. In a hospital. In an intensive care unit. What we didn’t know was how that actually worked on the outside. How do you put that into practice? What does living at home with medical equipment look like? Should we get rid of our cats? What if the wiring in my house couldn’t handle the power needed for a vent and humidifier, and feeding pump and suction rig? How do we keep the house clean enough for this? Would we have to get one of those tents like they did in the movie E.T.?

The universe, in its abundance, sent us a sign. They sent us a family with an eight year old boy who had been trached and vented all of his life. Across the PICU pod and in the hospital for a routine bronchoscopy (all kids with trachs do it 2x a year, Liam just had his most recent bronch last tuesday). In the way that nurses do in a hospital, without breaking any privacy policies, introductions were made and we were able to chat with parents who had been there. Parents who didn’t have a bubble built around their house. Parents who were wearing jeans and t-shirts  — not lab-coats or nursing scrubs. Parents who looked tired but not haggard. Stressed maybe but not strung-out. An ordinary family living an ordinary life.

That first conversation wasn’t even very long. Only a few questions and it wasn’t the actual responses that struck me but the almost calm nonchalance of it all. The impression given that there really wasn’t even anything worth talking about. “I don’t know what to tell you man.” I remember the dad telling me “There’s really not much to it other than changing the plastic parts, and when it alarms you do what it says, by the time you get home, you’ll know what to do. If he needs suction, you suction and you hardly even remember that it’s there. It’s what we needed to do to get him home and out of here.” I’m pretty sure after that answer we just started talking about the Red Sox. A few hours after that conversation, after days and days of discussion, we let the attending doctor know that we were ready to proceed. Liam’s tracheostomy would come a few days later.

 

A month and a half after that, this blog would be born.

*****

Not every family gets another family across the pod in the PICU. Not every family gets someone to talk to. It is my hope that this blog can be that family for someone else, and thanks to all of the emails and comments from many of you I know that it has been, but I’ve gotten away from that mission for this space. Lost in the twice monthly 1500 word essays are all of the boring, everyday moments that make life with Liam, just that. This life, with Liam. It can be exciting, it can be sad, it can be as happy and as frustrating as any other life. When trying to imagine this life I needed to know that this was possible, hopefully, in sharing all it here I can show someone else who needs to know that it can be done.

So get ready. I’m going to work on showing you more of the boring stuff. The nitty-gritty.

Karin has been telling me that what I’m missing are the little pieces inbetween the 2000 word meaningful essay and the 140 character tweet lie the sweet spot of really getting to the little things. Postlets she calls them, and I think she’s right. So it’s time to start stealing that idea. (why not, I steal most of her photos for the blog anyway. like the one below.)

*****

Postlet the first: Yes, if you read my twitter feed you would have seen that Liam was in the hospital this week. Liam is fine. He had his routine bronchoscopy. The ENT surgeon likes what she saw, things went well and all the overnight blood tests during his vent assesment were perfect. Today marks a full month since Liam has had even a whiff of supplemental oxygen. The longest span without bottled oxygen in his life. Confirming that with blood gases while he was int eh hospital was wonderful.

 

Boom!

Postlet.

I’ll talk to you soon.

 

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