parenting

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 Tea Roses

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

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

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

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

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

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

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

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

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

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

Playing Hookie

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We didn’t even tell him. Got him dressed and packed into his wheelchair. We even left the house at the same time that he does every day for school, but Liam didn’t go to school yesterday. I had the day off of work, and the weather was right.

Yesterday, we all went to the zoo.

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We’ve of course been to the zoo before but we were excited to go during school hours in the hopes that the zoo would be fairly quiet. It was, but not nearly as empty as we expected. Still, we were able to enjoy every exhibit at our own pace and didn’t have to battle through other groups to get Liam right up close, with only a minimal amount of the uncomfortable stares (sadly enough, they’re usually from the other parents more than the children).

There was one animal though, that I was more excited to show Liam up close and personal for the first time than any other, and I knew that no matter the feeding schedule or the weather, this animal would be available for Liam to meet.

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If you grew up in Rhode Island, chances are there is a picture somewhere in your parent’s old photo albums of you proudly astride the dog in front of the gift shop at the Roger Williams Park Zoo. I know for a fact that there are pictures of me on this thing along with my siblings and cousins. When we decided on letting Liam play hookie to head to the zoo getting to take this photograph was the first thing on my mind.

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Having the time to unhook Liam’s ventilator, feeding pump and oximeter, safely lift him onto the dog’s back and then have the picture taken? Well, that right there was more a more meaningful experience in Liam’s life than one more afternoon in a classroom could possibly bring, and I don’t care what his report card says about it.

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.

How Liam taught me to love The Bruins.

Maybe it’s the nonstop action. Back and forth so quickly and smoothly. Given Liam’s compromised vision though, I think it’s the contrast. Dark sweaters against a field of white. Hockey is the only sport Liam seems to enjoy watching. In person or on television it’s hockey that is the only sport that can come close to holding Liam’s attention for any length of time.

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Even after my uncle took me to see the team he coached when I was very young I didn’t really catch the hockey bug. When I was in the fifth grade a new neighbor moved in with a kid a year younger than me who loved hockey. We played street hockey in front of our houses over the next few years. I was aware of Ray Bourque, and Cam Neely and Andy Moog but even then I never really watched hockey on TV and once that neighbor’s kid moved away to live with his mother the hockey part of my life came to an end.

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A short burst of action followed by celebration and preparation to do it all over again, baseball and football are far to complex for Liam to understand. The variety of camera shots from field to sideline to close-up it’s all just too much to keep connected. Hockey is broadcast differently and the white background of the ice makes it that much more interesting for Liam’s ability to understand and find enjoyment from. You can see his eyes follow the action, something that he normally doesn’t do with any screen larger than his ipad. When Karin and I cheer a goal Liam will start waving his arms. A definite sign that he’s having fun. Watching the Bruins has quickly become our favorite family activity.

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To know me is to know of my lifelong passion for baseball and the Red Sox. Baseball has always been my game and although I’d definitely call myself a Patriots fan, football has always been a part-time thing for me. One afternoon a week and just a small distraction to get me through winter. Last year that all changed. Last year, Karin on a whim, she’s never told me if she ever had a reason, turned on the Boston Bruins hockey game before I got home from work one night. I came home a few minutes before the puck dropped and it was instantly apparent that Liam was interested in what was going on up there on the television screen. A rare occasion as I’ve already told you.

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The first period I just had to try to remember some of the rules and I will admit that I had to look up online this new hybrid icing call that I didn’t remember (apparently it didn’t exist when I was a kid) but I managed to get back up to speed fairly quickly. I had no idea of the strategy or plays that I was seeing but I knew what the penalties were at least. In the second period the Bruins scored. Not understanding what led up to it, the goal seemed to come from out of nowhere. Of course now I know the value of looking for triangles and getting pucks in deep and throwing pucks and bodies toward the goal to give yourself great rebound chances but at the time it looked more like a bit of luck than anything.

I literally jumped out of my seat and screamed while throwing my hands in the air. Anyone who has watched a Red Sox playoff game with can tell you how loud that I can be. With baseball, a game I played, a game I understand even the smallest nuances of, shouts come from anger, shouts come from frustration, shouts come from happiness and excitement. I have no idea where the shout of joy that Bruins goal gave me came from. Turning towards Liam and already apologizing to him I expected to see him fearful or recoiling from my sudden outburst. Instead I saw a smile and him flapping his arms like wings. A Liam sign of excitement. He could tell that mom and dad were happy.

It was in that moment that I became hooked.

We didn’t miss a single game for the rest of the season last year (about three more weeks of regular season play). Didn’t miss any of the playoffs either. Not a single game.

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In the 16 games that the patriots (a team I have been a fan of all my life) have played this season I think I missed 4 of them. In the 42 games that the Bruins (A team I’ve been a fan of for about a year) have played this season I have missed 4 periods of play or the equivalent of a game and a third. An overzealous convert for sure I know what we in sports fandom call this. Fairweather fan, or pink hat (a particularly misogynistic local one) and with the Bruins going all the way to the Stanley Cup Finals last year, I suppose that’s exactly what I am.

I really don’t care.

All I care about is how big the smile on Liam’s face grows when he sees his Mom and Dad jump out of our seats high-fiving and screaming our happiness every time A bruins player finds the back of the net.

In the past year I have become obsessed with the Boston Bruins.

It’s really just an offshoot of being a fan of Liam.

 

 

Story time

When I was a kid my family used to read to each other after dinner. My brother too young to participate in any of the three, each night my mom, my sister, and myself would rotate through washing the dishes, drying the dishes, or reading for a half hour from whatever book we were reading at the time. Madeline L’engle’s A Wrinkle in Time is etched in my brain this way. It was my favorite book growing up and a few years ago when I read it to Liam over the course of a few nights I distinctly remember sitting at our family dinner table and beaming with pride every time I hit a new word but didn’t need my mom’s help working out its pronunciation. The whole routine in no small part contributed to my lifelong love of books and stories.

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Among the mountain of gifts Liam received for both Christmas and his birthday sits this paperback boxed set of the Harry Potter series. None of us have ever read any of the Harry books, and we’ve only seen bits and pieces of some of the movies but I’ve got a pretty good handle on the story. Maybe I spent all these years avoiding the franchise, even after almost everyone I know kept telling me I should try it, so that I could share the experience with Liam.

While Santa left plenty of toys under the tree for Liam, this particular gift was from Karin and I. More than the physical object it is also a gift of time, a gift of an experience. An experience we will share together.

Anyway, on January 1st Karin and I will start reading the entire Harry Potter series to Liam. I’ll keep you posted on our progress.

Staying Ahead

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It’s hard work being five years old.

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

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

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

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

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

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

A Month?!

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

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

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

It’s time to make a change.

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

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

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

We’ll see.

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.

*****

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.