Hospital

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.

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My Bona Fides. 

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

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

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

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

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

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

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

 

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

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

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

it’s Liam’s story.

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

Storify of a Surgery.

It’s been a long week. Karin had surgery and was in the hospital for almost four days. To add to that stress her experience was beyond awful. While I didn’t blog or write during the stay I did tweet. Below is the link to a storify story I put together using the tweets I sent during her stay and the instagram photos I posted included in the timeline. Please have a look. It’s multiple pages and storify can take a little while to load but I’ve already written the details in these tweets and I don’t have the energy to figure out how to imbed the story into a wordpress post. If anyone does let me know and I’ll repost.

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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Trach – A film by Sean Devin and Jose Cota

Hard to believe that we filmed this almost exactly two years ago, and yet it also feels like it could have been ten. Two years ago we opened our home to a film crew for a documentary being filmed highlighting the day to day life of three families with trached children. Not long after separate sections of the film were being shown to respiratory therapists and nurses and other pediatric health care professionals in training rounds about families bringing home medical technologies with their children. I already blogged about that cut of the film of only Liam’s footage here.

Even if you’ve watched that version, please, please, please take the time (14 minutes) to watch the completed film: Trach by Sean Devin and Jose Cota. The footage stitched together with the stories of Liam, Corinna, and Alia. The filmmakers did a wonderful job putting it together, and I am so very proud to have been a part of it. We’d like to thank the Ventilator Integration Program of Hasbro Children’s Hospital for thinking of us as a family worth representing our special needs community. And also to thank Sean and Jose for capturing and communicating what life at home with a child and a trach can be like.

 

We didn’t even know it had been finished until a respiratory therapist at the hospital where I work, and a few facebook messages to Karin from some nurses at our favorite children’s hospital had all trickled in on the same day. They had seen a film with Liam in it! I’m still not even sure where it was first shared or used but it’s out there now and I am happy that it is.

My only notes on the film are One- that it irks me to hear myself refer to Liam as “the Patient” in one sequence but you have to understand it was a teaching moment and we were trying to speak universally, and Two – that Liam was pretty good in the movie but for our part the star of the show really ended up being our cat Calvin making his film debut at about 13:05 and really hamming it up for the cameras.

Damn cat.

 

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.

*****

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.

****

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?

****

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. 

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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.

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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.

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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.

Lock it Down Day 2013

I asked for the day off months ago.  I decided last year when this crazy calendar coincidence was brought to my attention that I wouldn’t be going to work on that date anytime soon. July 26th. A Friday this year. Inventory day. I don’t take Friday’s off, especially when I have to work on the Saturday and Sunday anyway. It wasn’t as if I was even giving myself a three-day weekend. I don’t work on July 26th anymore. I stay home and lock it down.

Lock it down day.

July 26th 2011. An Ambulance ride. A prep for Emergency Surgery. A perforated Appendix. An intestinal mal-rotation. It was the first day of 42 a day hospital stay that would include A blood stream infection, sceptic shock, post surgical ileus, multiple complications of his seizure med routine due to access issues resulting in huge seizures.

July 26th 2012. To tell you the truth I don’t remember how we got him to the hospital this time. I do remember that it was only 14 hours after we had been discharged from Liam’s week-long elective hospital stay to start the ketogenic diet. A back and forth that included a 104 degree fever. Gall stones (a side effect of Long time TPN nutrition and inflamed by the high fat ketogenic diet), a line infection. It was the first non-elective day of a month-long hospital stay that would include another blood stream infection. another case of sceptic shock, a post traumatic ileus, multiple complications of Liam’s seizure med routine due to access issues resulting in huge seizures.

July 26th 2013. Nothing. No ambulance rides. No car rides. I don’t think I even put on shoes. Liam slept in and then we watched movies on the couch. We didn’t do laundry, we didn’t do housework, we didn’t do anything other than watch tv, and read, and relax, and that was just fine with us, it was completely by design. Cocooned from the world in our little bubble we hunkered down and beat back the calendar. July 26th would be ours again! Our own family holiday.

Lock it Down Day.

Feel free to mark your own calendars next year and join in the fun. At its heart it is a pretty easy holiday to observe. All you have to do is NOT take your child to the hospital to begin a long term intensive care stay.

It’s already become my favorite holiday.

A Big Day for the Olson’s.

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It was a month ago now,(I know, I know, I’m sorry) but there we are, only a few minutes before taking the “stage”. The Schwartz Center Rounds at Women & Infants Hospital. After my 20 minute speech, Karin, Liam and I would move to the big comfy chairs for a half hour of the Oprah treatment with a moderator and then open the floor to more questions and some discussion from the audience.

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The event was marketed in flyers and emails around the hospital as

Liam the Lion: Quality and Innovation in Nursing Care, One Hospital Family’s Story and even went on to promise actual “Learning Objectives” such as

  1. Discuss the challenges faced by caregivers when colleagues become patients.
  2. Identify strategies to protect and preserve the confidentiality of a hospital employee or family member who is a patient.
  3. Identify the aspects of care that are most effective in helping families cope with a difficult diagnosis and lengthy hospitalization.

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And if you think that isn’t intimidating enough, imagine how I felt when we arrived and I found that there was an evaluation sheet for each attendee to fill out in order to receive their continuing education credit.

“Better bring your A game Bubba.” I turned and said to Liam when we saw them. “Looks like we’re being graded.”

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As it turned out, I had nothing to worry about. Once I got started and was a slide or two into my presentation I started feeling very comfortable despite a packed room that even included a few people standing since we had run out of chairs (which I know the room started with 75). I don’t have much public speaking experience but on that Tuesday afternoon I felt like it may just be something I could get pretty good at with a little more practice. I think it was the first laugh from the audience, at a time where I had hoped they would laugh, and the nervousness of inexperience started fading away.

The only fear left to overcome was my own feelings of illegitimacy. What business did I have to be speaking in front of such a large crowd of Doctors, Nurses, and Hospital Administrators with any kind of authority? All I had to do to get over that silliness was take a quick look to my right at the real star of the show.

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Liam was incredible. He stayed awake and alert throughout the presentation and seated between his mother and I he really did steal the show which I’m sure will surprise none of you. Karin was equally impressive and gave thoughtful and insightful answers to difficult questions about so many of the layers of complexity to our family’s relationship to that hospital.

Liam’s story has value. Our family’s story has value. I’ve learned this through the outpouring of support and friendship from people, literally, all over the world that have reached out to me because of this blog. This blog and all of your support is what gave me the crazy idea that I could even do that speech. It’s what gave me the confidence to throw my name into the ring when the hospital Patient and Family Centered Care Advisory Council put out a call for  new applicants. It’s what has opened my eyes to the possibility of using our experiences in the health care industry, in the special needs community, and our new journey into special education to share, to advocate, and to speak out for the countless other families like ours who don’t have a voice, or the energy, or the confidence, or the time to do it.

It may sound like I’ve gotten a little full of myself here, and I suppose I have. I have to, because if I really am going to make things like patient advocacy a bigger part of my life (and someday hopefully turn this passion for the subject into a future career) than I need to go into it knowing and believing that I can. To give myself legitimacy in my own head before I can expect it from others. Until the reaction I got from that presentation (including more than one request for a repeat performance) I wasn’t sure in my own head that it would be possible.

But, now? Well, a few weeks after the presentation the Schwartz Center emailed me the results of those evaluation cards. Turns out Karin, Liam & I got all A’s!