family

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

 

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.

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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.

 

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

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

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.

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“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.

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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.

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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.

 

 

 

 

 

Still here.

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I could (and will) tell you awesome stories about Liam about to start trialing time unattached from his ventilator, or how amazing his progress as we cruised towards the end of his school year. I could (and will) post the essays I’ve started on my problems with the IEP process or my frustrations with what is commonly called the “dadblogging community”. I could (and will) regale you with the tale of finding a hidden gem of a local hiking path that is wheelchair accessible.

Although I could also (but won’t) tell you awful stories of two months of my erratic and inconvenient work schedule wreaking havoc on the time I’ve had to spend with my wife and son. I could (but won’t) post an essay about the grind of 24/7 care especially when the once a week night nurse relief unfortunately had to miss her shift due to a family emergency, leaving a 14 day stretch of less than 4 hours of sleep a night for both Karin and I. I could (and still might) regale you with the tale of the 14 hour hiccup attack and the car inconveniences and all the other things that come up and take away our ability to get the rest we need. The rest I apparently need to have the energy to blog at the end of the night (early morning) while I’m up watching Liam.

I really need to just start blogging in the morning.

In the meantime I’ll just post a picture and a wave hello. Tomorrow my work schedule goes back to normal. Tomorrow our usual daytime nurse (who has been caring for Liam for the past four years) comes back after 6 weeks on a medical leave. On Friday I’ll start a ten day vacation from the day job.

I’ll be around soon. For now here’s a picture, and a wave hello.

We’re still here. Thanks for coming back.

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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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!

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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.

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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.)

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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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Liam’s Mom Won’t Take Any Sick Days.

Were it Liam who needed to rush to the emergency room at 4am Saturday morning we would have known exactly what to do.  The movements choreographed, decisions made in seconds. Even in the most stressful of times a calmness of knowing what to do takes over. Were it Liam.

When it is one of us though, things go a little wonky.

So when Karin came downstairs at 4am, which is our time to switch posts anyway, with a swollen puffy face it took more discussion than it should have before she left to get treated in the emergency room. We both knew she needed to go. Niether of us wanted to say it out loud. knowing what we know about E.R.’s we both knew what she was in for once she got there. Hours and hours of waiting in a waiting room, before hours and hours of waiting in an exam room. Admitting desk, nurse, resident, attending, repeat your symptoms and the timeline again. Karin’s run this drill before.

Only this time…do it alone.

It isn’t as if she didn’t think she needed to be treated or that she was too scared of all of that, no it was that if she left to be treated who would take care of us. Absent the fever Karin was showing signs of a major infection in her face but she was more concerned with how I would get any sleep before work once she left. Who would do Liam’s trach care in the morning? Who would be the mom, should the mom get admitted to the hospital?

Thank God it didn’t come to that. 8 hours after walking in the hospital, after a battery of tests and x-rays, an IV antibiotic and a handful of prescriptions later Karin came home with the answers. A pocket abscess. An infection growing at the base of an old root canal. Had she hesitated to go get it checked out who knows where the infection could have spread. Bloodstream, eye, brain or airway, we know a thing or two about infections in this house. We know about sepsis. We know what could have been.

This morning, five days after this whole ordeal began, and two days after she had met with a trauma dentist (a title I had never heard of before), Karin saw the oral surgeon and had the procedure to clear out the infection. The pain she has endured all week now threefold. Swelling, which had receded with the antibiotics, now back with a vengence thanks to the cutting through gums and drilling through bone.

Given the same I would be curled up in a ball. She did laundry.

Try as I might to get her to stay in bed all night to rest she insisted on taking her “shift” so that I could sleep before work.

She is incredible.

Unbelievable.

And amazing.

I’m sure she thinks I can take care of Liam by myself if I had to — but she’ll be damned if she’s ever gonna let me prove it.

I didn’t do it by myself though. I called in some favors. Liam’s nurse enjoying a day off with his family responded to my text immediately and was willing to come and be with Liam so that I could go to get karin at the hospital if I needed to (she drove herself home because she didn’t want to bother anyone). My mom came to sit with Liam so Karin could get some sleep and I could go to work. Karin’s mom came up to take her to the oral surgeon so that I could go to work today as well.

I didn’t do it by myself.

How much do you want to bet that if it were me in the E.R. that Karin would have though?

Well that’s a suckers bet. You don’t ever want to bet against my wife.

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In the time since I’ve posted last we’ve had a super-hero themed birthday party for a five year old. I’ve been approached to give a presentation to a hospital bio-ethics committee and to be the keynote speaker at a conference on former NICU families this summer. We’ve even painted our living room which is significant only in the fact that it’s the most “moved in” to this house we have gotten since we bought it while Liam was in the NICU. Every one of those things could have made a great blog post but have gone unmarked. Longtime readers will know — tales of hospitals, E.R.’s, and illnesses?
Well that’s just what I do best around here.

So scared I had to write about it.

I don’t know what most parents fear. The big health related things. I just don’t know how to relate.

What if my child can’t breathe, and needs a machine or a tube? What if my child can’t walk and needs a wheelchair? or can’t talk and can’t tell me what they need? What if my child spends months in the hospital and will never be like all the other kids?

What if he’s different than all the other kids?

I don’t fear any of those things anymore. Doesn’t mean I’m all the way over them, but there’s no sense in fearing what is right in front of you.

Just gotta deal with it.

What I do fear that every parent fears is having my child taken away from me. To be told that I can’t be near him. Worse than just the being taken, being taken by people who presume to do it under the guise of knowing what’s better for him than I do, than his mother does.

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It took me three days to read the article. {part 1 which is linked below seems open to read for now, but part 2 is hiding behind the Globe’s pay wall. I’ll block quote some of the choice bits} Not because of length but it hit too close to home. I couldn’t handle it all in one chunk. I was reading about a family, a few families, going through something that crosses my mind far more than occasionally. Please give it a read. I’ll wait for you here.

A medical collision with a child in the middle

Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody

The first 12 paragraphs sent shivers down my spine and tears to my eyes. This is not a new fear for me. I have thought about scenarios like this for 5 years. Of the doctor who thinks he knows better. Of the resident just out of medical school wielding the POWER OF THE TEXTBOOK in their zealous pursuit of recognition from the attending doc, with my child as the apple. Of being railroaded because the stress and exhaustion of this life or another hospital stay, leave us a medical-record documented reputation of being “difficult parents”. Of the assumption that Liam’s inability to verbalize any pain or discomfort means he cannot communicate it, to us.

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I already know that many of you will send emails or comments that my fear is irrational and that something like this could never happen to us. That it’s apparent how much we care for Liam and no one could misunderstand our intentions. But things like this happen to families exactly like us. They happen far more often than I wanted to know, and even more terrifying, they happen so often so very close to our home.

Doctors disagree all the time over the diagnosis and treatment of patients, but Justina’s story reveals a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals escalated with stunning speed. Just a few days after Justina had arrived at Children’s on Sunday, Feb. 10, doctors were urging state child-protection officials to take emergency custody of the girl from her parents so that Justina would remain safe and get the care the hospital’s team recommended.

These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

Let’s all just waft past the infuriating, and insulting little tidbit about the industry’s pet name for this little maneuver to the sheer number of instances at this one institution about 45 minutes to our north. A hospital in which Liam has been admitted and put under anesthesia; at least 5 in the last 18 months. At least 5 families ripped apart by the very same people they ran to seeking help for their child. It honestly makes me hesitant to bring Liam there ever again.

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In Massachusetts, the Department of Children and Families investigates all child abuse and neglect complaints and is supposed to be a neutral referee assessing the charges against the parents. Many parents and their advocates complain, however, that the state agency, because of its lack of in-house medical expertise and its longstanding ties with Children’s, is overly deferential to the renowned Harvard teaching hospital.

And there it is. “Lack of in-house medical expertise”. Liam has seen tens of seasoned specialists, to say nothing of the dozens of residents and interns who have swooped in and out of his hospital rooms, and only two had ever treated a patient with Miller-Dieker syndrome before. Yet many (far too many) thought they knew better than us about what was best for his care when they read a few journal articles and their chromosonal translocation textbook. What are the chances that the Massachusetts Department of Children and Families is going to believe us instead of any jerk in a Children’s labcoat?

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The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

And here is where I laugh through my tears. Highly stressed and difficult to handle. you read that right. I’m beginning to wonder how many times I am referred to this way in Liam’s chart.

But it’s the second part that gets me. Liam has spent 5 years building a treatment plan with, as I’ve said, many doctors. Should I, or Karin, or Liam be punished for listening to and believing the diagnosis from the few doctors we have built up a level of trust with. These parents are being vilified for having the audacity to question doctors who have had just days of interacting with this patient. Days instead of years, and since the parents are not instantly convinced that ALL OTHER DOCTORS YOU HAVE SEEN BEFORE ARE WRONG it apparently can be cause to remove children from their families.

WE ARE BOSTON CHILDREN”S AND WE HAVE SPOKEN!

uh-huh.

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As tensions with Justina’s parents were rising, Newton reached out to Korson at Tufts, [the diagnosing physician who had cared for Justina] though not for his views on Justina’s medical care [emphasis added by me -eric]. Her call was primarily to tell Korson that Children’s had begun investigating the Pelletiers for possible medical child abuse. The only other contact with Korson had come Monday, when a Children’s neurology resident called him for a quick summary of his treatment of Justina.

Although inherent in these cases is the suggestion that doctors like Korson were giving care that a child shouldn’t be getting, Newton, like many in her field, generally saw the physicians as innocent victims who were misled by remarkably persistent and deceptive parents — almost always mothers.

If there’s one thing I’ve noticed about all of the special needs parents and families I interact with, it is how many of them are deceptive and misleading. I guess it’s just become the stereotype now.

And if you do follow the advice of all those bad doctors you saw before you came here to Children’s? It’s not their fault, they were all probably just hoodwinked by you Mom. More cause to take your kids away.

I’m making jokes and getting sarcastic now. It’s the only way I’ve been able to write this piece.

I’m trying to hide my anger.

Because behind all that anger is the fear.

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I realize that the families in the article have different diagnosis and that a big chunk of it focuses on one diagnosis in particular, if the hospital can railroad over a family where the 16-year-old patient is even able to demand a lawyer (a demand that the article implies went unfulfilled) what chance does Liam have without Karin or myself at his bedside?

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Let me be clear that I am not denying that there are cases of “medical child abuse” out there. When Doctors see red flags of this, even in all of the cases outlined in the article; even in our own case, it should be investigated by social workers and appropriate personnel. What I find most horrifying and hard to accept is that a.) in less than three days and b.) based on the recommendation of a Dr. barely 8 months out of medical school and c.) without the consultation of Justina’s primary care physician or specialists, Boston Children’s had the power to have her parents stripped of their rights. If, as in Justina’s case, a judge needs to hold a hearing to allow me to even visit Liam in the hospital, all based on the say-so of a doctor who does not know him, I am going to be facing far worse legal troubles. Like, the charges for when I punch the poor orderly, intern, or security guard tasked with forcibly removing me from Liam’s bedside.

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I’ve worked hard this year to position myself in a place to try to change my career sometime soon into the field of patient advocacy. My work with the Women & Infant’s Hospital Patient and Family Centered Care Advisory Council has shown me that it is what I was meant to do. Now this article has shown me that I need to tweak my focus a bit. This is what I need to be fighting against, and in 2014 I plan on figuring out how to try to accomplish that. But it doesn’t make any of this any easier.

There’s no way for me to tie this one into a nice little conclusion for you. This post doesn’t have a happy ending and writing about my fear didn’t magically make it all go away. I’ll probably always be afraid of this and perhaps I’m overreacting but I’m going to stay vigilant against this happening anyway because the alternative still keeps me up at night.

And I’m betting it always will.

#tbt

Over on Twitter (@pressuresupport) and Instagram (Pressuresupport) Throwback Thursdays or #TBT is for posting pictures of yourself from the past. I don’t think I’ve ever taken part, but over the weekend I pulled out the old Nikon to take some photos for my dad and I found a memory card that I hadn’t used in close to five years. 

canulaliam

In the last few weeks of Liam’s five and a half month NICU stay we were allowed to book a “family room” for up to 12 hours to spend the day away from the nurses and the other patients of the bay system unit. We would invite family to visit so they could hold Liam away from the noise and stress of the bay. More often than not Karin and I would take turns taking naps with Liam in our arms. We would watch movies and take pictures and started learning what it was going to feel like being a family at home.

KandLfamilyroom

Here we are. Almost 5 years ago. The memory card was chock full of good shots so in the coming weeks leading up to Liam’s fifth I’ll throw back on Thursdays to a time of innocence. A time of naive confidence. A time without a single grey hair in my beard.

meandlfamilyroom

Looking back on these, even though we had already been through so much; we had no idea what we were in for.

Still don’t.