dadblogging

9 Years of Being Called Dad.

IMG_4958

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.

*****

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.

*****

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.

****

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

 

Picking Our Battles

Editor’s note: Due to a poorly designed web interface from wordpress, an incomplete, incoherent, and unedited first draft version of this post may have been sent to your inbox if you are an email follower to the blog. So if it reads familiar that is why I’m sorry about that, and about the multiple emails from me tonight. please give it another try for me. Here’s the blog as it should read.

The principal of Liam’s school during a very heated and contentious meeting that also included the director of pupil services and the superintendent of school for the city of East Providence (yes, even the supt of schools, you don’t want to piss me off when it comes to giving Liam the services he needs, he deserves, and he has a right to) once told us that she was offended by the fact that she had heard my wife describe our interactions to demand the wheelchair lift that she had promised as “battles”.

My son was being made to leave his school building up to 5 times a day to re-enter through a different entrance to be on the floor where his other classes (art, library, music) during rain and cold weather but she was offended by our use of the term “battle”.

Her solution, as winter quickly approached and there was still no accessibility for Liam and the handful of other students who use wheelchairs in the school, was to put him in the 3rd grade class for those subjects. 3rd grade, for a developmentally disabled kindergartner, because those classrooms were closer, as if he were a piece of furniture. yet SHE was offended that we used the word “battle”.

During the same meeting this principal was caught flat out lying to us about whether or not Liam was already being put into the classroom with third graders without our permission (helpful to have a nurse follow Liam’s every move and texting us when something feels hinky) yet she was offended that we used the term battle.

It was a battle and we told her so again.

It was a battle that we won.

The wheelchair lift was installed over the holiday break in january. We haven’t had to interact with the principal since. I’m sure she’s thankful of that. But the next time we do have to cross paths. that will be a battle as well.

Because when it comes to making sure that Liam gets the services, the equipment, the supplies and even the medicines that he needs, it is always a battle.

One that his mother and I are perfectly suited for, and happy to fight.

*****

The equipment company that takes over 10 months to fix the armrests on Liam’s chair after his orthopedist and physical therapist alerted them that his original rests were unsafe and he was at risk for getting his arms caught and/or dislocating his shoulders during a seizure. After months of phone calls and emails, and not only one but TWO scheduled appointments for an equipment technician to come to the house to fix the chair where the tech was a no-call no-show (with Liam staying home from school specifically for both) the tech finally, on the third try, arrived at our house with parts, only the parts that he brought weren’t the new ones, they were the exact same armrests already on his chair. Then we got to start from the beginning all over again, signatures from doctors, approvals from insurance companies, months and months of opportunity for Liam to be injured with unsafe conditions in his chair. Being blown off by uninterested “customer service reps”

A battle in every sense of the word.

It shouldn’t take a full school year to switch a part on a wheelchair when multiple medical professionals deem it unsafe, but this is the system we fight.

Twelve days ago the armrests on Liam’s chair were finally replaced.Still, after 10 months, I have a hard time calling that battle a win in our column.

*******

The pharmacy that despite knowing that Liam has been on a med for over four years refuses to carry a full refill supply of it. Whether for the saving of shelf space or a refusal to pay for it until it has been paid for by my insurance, every time we call for the re-fill we are given a “partial order”. ‘We can only give you a few doses. Come back in two days for the remainder’ they say, increasing the chance of an error.

Three days ago we were told that they would not re-fill Liam’s prescription. We should have enough for 14 more days the insurance company computer told them, and they would not give us any more until then. End of story.

Or so they thought. Karin can be very persuasive. She has to be. Our sniper of phone calls. Explaining to the poor sap working his part time shift as a pharmacy tech that he was plainly wrong, and that they had to go back and recheck how much volume we were given in our last ‘partial’ fill. That not only would we not take no for an answer, but that we would hold him and his company responsible when Liam would need to be admitted to the intensive care unit the next day because of the withdrawal he would experience if they failed to fix their mistake.

Yesterday they called and explained that they did an inventory of their supply and found that, what do you know, they did owe us 14 days worth of Liam’s medicine. found a whole bottle with his name on it and everything.

That happened this week, but similar situations with prescriptions have happened dozens of times before. Liam takes 11 different perscription medications, Many of them in large volumes that for some reason this enormously recognizable corportaion refuses to keep in stock. The battle against incompetence is very real.

*********

The medical supply company that provides Liam’s everyday supplies like trachs, trach ties and vent circuits, suction catheters and feeding pump bags, pulse oximeter probes and fenistrated gauze sponges. All the things that keep Liam in his home and not in a hospital but that you can’t just roll up to your local megamart and buy if you run out of them. Again, if we run out of many of these supplies our recourse for keeping Liam alive is a trip to the hospital until we recieve these supplies, so you would think that a person going on vacation or leaving the company for another job wouldn’t put my son at risk but of course, you’d be wrong.

Because even if these companies cared about the patients that rely on them (which they don’t) the patient is not their customer. The patient’s insurance company is and as long as those reimbursement checks and approvals keep coming in, they can and will treat their patients like garbage. Including sending out Liam’s monthly order of necessary items with invoices showing that they have been paid for, but many of the items just happen to be on “back order”. Nearly every other month, when we are washing and reusing what should be disposable felt ties that hold Liam’s trach in place at an exposure point for infection, it gives me such comfort to see that the company has already received the funds for those products. Essentially removing the motivation for them to rush those type of products out to us.

The patient is not their concern, their shareholders are, the insurance companies are, medicaid is. But make no mistake, it isn’t my son that they care about.

So they don’t like hearing my voice on the line, every month when we run out of the things that keep Liam alive. Where Karin is our sniper in battle over the phone; I am our nuclear bomb.

********

The oxygen delivery service that brings Liam his oxygen every other week decided last month that instead of delivering on Thursday they would be switching our delivery day to Tuesday. I shouldn’t be the one who has to point out to them that if you are changing us from thursday to tuesday that you have to make that change on the tuesday BEFORE the normal thursday delivery, or else we will run out of oxygen. I shouldn’t have to be since you would think the dispatch and delivery department for an oxygen delivery company would understand that people’s lives rely on them doing their job correctly.

You would think that, but you’d be wrong.

The job doesn’t get done correctly without a fight.  Without a phone call. Without a battle.

*********

School departments, insurance companies, medical supply and equipment companies. “Partners” in care. They arm themselves with bureaucracies, with paper, with seemingly automatic denials only to approve to anyone with the audacity to appeal. (how many people get an insurance denial and don’t think they can appeal? The math must work out in their favor.) They defend themselves with red tape, with their “policy”, with the incompetent at best and inconsiderate and uncaring “customer Service reps” at worst, and every single time, it puts my son’s life in danger.

Which is why we fight. Which is why we arm ourselves with emails, and phone calls, and documentation. It’s why I can be such an asshole on the phone. We fight incompetence with aggressiveness.

And we always win.  We have to.

Our son’s life depends on it.

The Year (so far) in Pictures

Full disclosure, If you follow me on Instagram (pressuresupport) or Twitter (@pressuresupport) you’ve probably already seen most of this, But this way, you can see it again all in one place.

Yay?

*****

I guess I just picked the wrong year to fall off of my blogging game, because Liam’s 6th year has been a pretty good one.

As you may recall the northeast got buried under record amounts of snow this year. Here in Rhode Island we got clobbered. I usually don’t mind the snow but in 2015 I anticipated the spring in ways I have never looked forward to a season in the past. Liam agreed.

So the year started out a little rough, but as we always we do, we trudged through it, and made it to the good parts. Let’s be honest, no year is going to be perfect, and we’ll never be able to look back on a time period as long as six months of Liam’s life without a bit of medical drama. All things considered, the first 6 months of 2015 were pretty good in that regard, with only a few blips along the way.

Blip the first was when Liam’s physical therapist thought there may be something a little hinky going on with Liam’s shoulder and recommended we see the orthopedist. Which we did, making sure we got in there as soon as we could.  The orthopedist, realizing he hadn’t done a full workup of films on Liam in a long while ordered the works instead of just his arms and shoulders. It seemed like a good idea, so we agreed to get a bunch of extra x-rays while we were there.

You see? I never stopped thinking like a blogger. Who but a special needs parenting blogger takes a picture of his son getting the x’ray work up?

The films came back quickly and we got the news that afternoon over the phone.  Liam’s shoulders are both completely fine.

….

His hips however are both dislocated.

Naturally. They grew that way, and although the shock of hearing it had me very worried for a little while, this is far from uncommon for children with muscle tone issues like his syndrome presents. Liam is showing no signs of any pain or discomfort, which is why the diagnosis came as such a shock. In fact unless he shows us otherwise, because there’s no sign of pain or circulation issues, because he can still use his stander and his walker, and because his spine is straight as an arrow, there’s really nothing to be done about it anyway. Liam will just live with a couple of naturally dislocated hips. Add it to the list.

He’s still a rock star.

Dislocated hips? Don’t care, I’m still walking.

Medical blip the second, a short hospital stay for a bout with pneumonia. Just one of those things that happens, and a chance for Liam to visit with and show off for all the doctors, nurses, and therapists at the Hasbro Children’s Hospital PICU that he hadn’t seen in so long.

Yes other than that Liam stayed away from the hopsital for the most part this year. And it showed, because being 6 years old has been a year for Liam to be where he belongs. Out and about and in the community.

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

This year, beginning in January, once the school was finally set up to handle Liam’s needs with the wheelchair lift finally installed, and his teacher and the classroom aides really getting to know how to effectively communicate with Liam, he really started excelling in kindergarten.  With reports of improvement in all sorts of areas, including the making of paper ducks.

But like any kindergartner, Liam enjoyed the special days more than any. Like when a turtle came to visit the class.

And “Take a Special Friend to School” Day, where someone very special got to spend the afternoon with Liam and his whole class for an afternoon. Recess was my favorite part!

Or on field day where Liam and his nurse/ninja/best buddy Walter competed in the three-legged (and two wheel) race.

Outside of school things were just as good this year. If you’ve followed me for very long at all you know just how much the Roger Williams Park Zoo in Providence RI means to us and to Liam. This year has seen no change to that. In fact this spring when strolling the place we were stopped more than once by Zoo staff who knew and recognized him as Liam! the boy who named Anton.

When Liam goes to his hometown zoo. He gets treated like a rock star.

But not only by the people there.

Liam has fans of all kinds at Roger Williams Zoo.

 

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

 

Dream Night this year was fantastic as it always is. I didn’t take as many photos though, I was having too much fun just taking it all in.

And so was Liam.

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

But it wasn’t only when out in the community that Liam had a great year. He had some good times at home too.

 

Like on his swing in his own backyard.

Or showing off for his mom and I when using his head switch to utilize the communication apps on his ipad to answer yes and no questions.

And as much as Liam likes working with his ipad, he’s an old soul and still loves the feel of a good old fashioned book. So a gift of books directly from the artist and writer himself (who went to school at RISD with Liam’s Grampa, my dad) was an especially exciting treat.  Thanks Aaron!!

 

Not as big a treat as hanging out with Dad in the driveway while brewing a new batch of beer using Olson & Son Hopyard hops though.

Liam is an exceptional assistant brewer.

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

But the thing with being around Liam is that there is an aura of joy that follows him, not only during special events or during treats. There is a joy just being around him just resting on the couch or going for a walk around the block.

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

There was a time when fathers would keep pictures of their kids in their wallets to share with co-workers friends and anyone who would listen. Today we have Twitter and Instagram, facebook and our blogs for that, and here’s mine. While on my blogging hiatus I heard from so many of you who wanted to hear about how Liam was doing and missed seeing his pictures. I’m sorry about that. Along with more essay posts about parenting a child with complex medical needs, I forget how many people just like seeing Liam’s smile.

I won’t forget that again.

Here, have one more smile at the end.

Like I said, the first 6 months of 2015 have been pretty good so far. Let’s hope it keeps up, and if it doesn’t, as long as I get to see that smile every now and again, we’ll get through whatever this year can throw at us.

 

The games we play. 



Liam doesn’t go in for most game-play. Games that require speech, coordination, or mobility just aren’t Liam’s thing. But eye contact with daddy? That Liam knows very well, and since he’s been old enough to swing his head from one side to the other we have played our own game.



We start facing in opposite directions until either one decides to swing all the way around to smile at the other. Wait too long and don’t meet his eye at the right moment? Well no smile for you and we swing our heads back around to start over. Synchronize head swings and meet in the middle at the same time? Well then you get the prize of Liam’s joy. 



We’ve been playing this game most of Liam’s life, but tonight’s match when I got home from work was a real barn burner. 

We both won. 

My Bona Fides. 

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

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

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

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

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

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

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

 

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

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

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

it’s Liam’s story.

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

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.

20140805-011750-4670184.jpg

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.

20140805-011412-4452829.jpg

 

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.

 

20140805-011414-4454662.jpg

20140805-011413-4453861.jpg

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.

20140805-011413-4453112.jpg

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.

 

 

 

 

 

Tired.

About 12 hours from this writing will mark 8 days since Liam has used bottled oxygen. That’s the longest he’s ever gone without O2 in his lifetime.

Last Thursday was Liam’s 4th IEP. Talk of kindergarten and adapted physical education. Goals, therapies, benchmarks and progress reports.

Spring is happening and the hops are poking out of the ground.

In just the last week there been so much going on that I should be blogging.

But I’m tired.

Though no one’s fault at all, circumstances left us without a nurse for the past week as well. I’m not going to explain all the little things that changes for us and our routine because, again, I’m tired. Karin and I are more than capable of taking care of Liam without nursing, (Although, while I am positive that Karin would be just fine doing this without me around, the opposite is so far from true. I’d be lost) round the clock care without any breaks will wear you down.

So while I’d love to blog about oxygen, IEP’s, and the need for us to learn to trust more nurses (in case our favorites can’t work), I’m tired. Liam seems to be asleep, and Netflix now has some Green Lantern cartoons that I can watch until 4am when Karin will get up and I get to go to bed. Watching cartoons is easier than blogging and like I keep saying.

I’m tired.

20140416-012958.jpg

Breaking Through the BS.

I’m tired. I’m busy. I’ve been battling this headcold for a week. I’m focused on other things.

Whatever.

If this kid of mine, who was “never supposed to be able to walk” can suit up in his walker at school and walk 67 feet (yes we measured. 101 8 inch tiles) down the hallway what valid reason can I possibly come up with to not find the time, motivation, or energy to brag blog about it here to all of you?

image

There’s no excuse.

I’ll try and do better.

For now the Keto is a no-no

Liam had a long slow burn of a seizure tonight. It started slow with a twitch and a full body spasm for only a few seconds every three or four minutes until it clustered about ten minutes after it started. The nasal versed we’ve been trialing to break larger events worked just fine though, and he drifted into his drug induced haze right at his normal bedtime. If he’s going to have a big one, that is just about the perfect time for it. So aside from his normal twitches that’s two for the day today,  this morning’s was much milder.

You may recall that in late July Karin and I elected to admit a healthy Liam into the hospital to transition him onto the ketogenic diet. Hoping that the high fat, no carbohydrate diet and the ketones his body would produce as a result would reduce the quantity and/or severity of his seizures. Within days we were seeing a change. Cranky and miserable while his body fought what instinct told him was starvation, by the end of that first week we saw a few seizure free days and returned home hopeful that this diet really would help Liam reduce the amount of seizures and as such, anti-seizure meds he has always been prescribed.

Just about 14 hours later Karin and I were admitting a very sick Liam into the emergency room for what would end up being a 26 day stay in the intensive care unit to battle septic shock, the ileus (intestinal obstruction) that resulted, a severe increase in seizures, the constant struggles in finding and maintaining IV access including two different central lines being put in (one of them by the surgical team), and the discovery of an enormous blood clot which is the result of the first of those lines. Oh and one other thing but we’ll get to that later.

For the first few weeks of that stay we stayed true to the diet, even when Liam was NPO. instead of the normal D10 or D5 for hydration, Liam’s maintenance fluids were specially made in the pharmacy to give him as little dextrose as possible. His IV meds were specially made because most solutions contain dextrose. The chlorhexidine wipes that hospitals use for sponge baths contain glucose so we went old-fashioned with good old soap and water. Basically, let’s just say that keeping a kid who was sick enough to stay asleep for days and days at a time on  this ketogenic diet was getting a lot more complicated.

While investigating some blood in his stool (I know some of these details are a little  “too much information” but they really do tell the story, ultimately it was another byproduct of the shock and resolved itself eventually) a bright circle appeared on one of his x-rays. A circle that seemed so symmetrical as to appear unnatural it was at first disregarded medically,  The assumption being that it was one of the leads to Liam’s heart monitor or a piece to the in-line suction tube of his circuit. A few days and a few more films later, the diagnosis surprised us all. Gall stones. A ton of them. Little crystals that when his gall bladder was tasked with breaking up such a high fat diet  rose up in revolt and clustered together into a mass to protest.

Freaking gall stones at three and a half.

Now I don’t think I need to explain how severe a gall bladder surgery on any three-year old would be nevermind a child as medically complex as Liam. Lucky for us, the medical consensus was not to do anything. remove the strain on the gall bladder and they should spread out again and not cause Liam any pain I was told. So I asked another doctor, and then another, not believing that finding a gall bladder full of tiny stones wasn’t a more major problem that would require at least some kind of intervention. Come to find out, no one was even all that surprised.

All told, by my very rough estimate, I think Liam has spent about 6 to 8 months of his life on TPN and Lipids, nutrition through an IV instead of his gut. Of course nothing is without its side effects and apparently gall stones is one of them so to find out that they were there was hardly a shock. They were there the whole time. The only reason that we know they are there now is because Karin and I took our healthy little Liam into the hospital to try the ketogenic diet.

A diet.

Adjusting for weight every half-year or so, day in and day out Liam eats the same amount of calories. Pumping through his g-tube exact amounts of protein, fats, and carbs in his formula Liam’s diet for his entire life had been designed to make it as easy as possible for his body to digest. He has grown so big and strong and since we hadn’t had a hospital admission in just about a year Karin and I were convinced that now was the time to try the diet.

Liam is no longer on the ketogenic diet. Until he is strong enough that we consider removing the gall stones (and with them probably the whole gall bladder itself) he will not be able to resume the ketogenic diet. Sepsis and blood clots, staying on seizure meds and giving injections of blood thinners, I feel guilty about trying this diet every single day.

I think I always will.

But even living with the constant guilt, I know that we made the right choice in trying.

We knew what the risks were going in. We were the ones who approached our neurologist to try. Seizures suck enough, the long and short-term side effects of pretty much all meds to control seizures suck just about as bad. To think that there was an option to control seizures and reduce the amount of meds Liam required simply by changing his formula? A case could be made that we would have been negligent in not trying it. Right?

That doesn’t make it hurt any less when I think about everything Liam went through for us to find out. I know he understands. I know he’s a fighter and wants to beat these seizures as much as any of us do. He tells me with his eyes. That doesn’t make me sleep any easier remembering what he had to go through in that intensive care unit. There was no reason that anyone could have predicted the events that transpired from this change. That doesn’t make the thoughts go away that I somehow should have seen it all coming.

*****

The universe works in amazing ways.

Liam’s NICU stay was 153 days long. In a teaching hospital that’s 5 months of residents rotating in and out every 30 days. Among them when Liam was born was Dr. S. just beginning her residency and in her first rotation. About 10 months later she started her rotation into the PICU. At the time Liam was about halfway through a 109 day stay there. The following year Liam was admitted for a virus that attacked his GI and who should arrive to consult when the GI team was called but Dr. S now onto that rotation. During his last few admissions though, Dr. S would just come by to say hi to her buddy Liam whenever she saw his name on the patient list.

Liam has a hematologist now. Cross another specialist off the list. He is now a patient of the hematology clinic at the Tomorrow Fund of Hasbro children’s Hospital. Last week we went in to asses the level of his blood thinner and go over any other concerns of the three to six month course. We weren’t there to meet with the attending of course but the fellow. The fellow, a year-long assignment instead of a month. The end of being in medical school and the beginning of being a doctor. (technically they are “doctors” the whole time but you catch my meaning.)

So it should not surprise anyone at this point when in walks the hematology fellow — Dr. S.

For us and for her it was coming around full circle. Liam had been a part of her entire med school career. She even remarked about it to the attending who popped in towards the end of the appointment.

“Yeah, you’ve been a part of Liam’s team his whole life.” I said.

The attending looked at Dr. S and then back down at Liam and said ” Oh she’s not alone. I’ve looked over his chart. I bet there are a whole lot of doctors out there who this boy has taught something to.”

She’s right. There are. And Liam is an excellent teacher.

The connections that we make with other people mean something. Something important. That is no less true for a person like Liam who can’t make a connection verbally. He can’t sign and for the most part he can hardly smile (with his mouth. Liam smiles with his eyes and anyone who has seen it can tell you that it has the power to change the way you look at the world.) but the connections and bonds that Liam can make above all those obstacles mean something, to him and to us.

During that last hospital stay Karin and I were able to meet a parent whose child had just been trached. We were able to give our experience in how we are able to manage a trach and vent at home. That means something. We were able to meet a doctor we hadn’t yet met and although Liam was not her patient she would visit him and us, and we would talk for long periods about what this life of ours is like. A strong bond of friendship not doctor/patient was quickly formed. That means something.

Any future patients that enter Hasbro Children’s Hospital to try to start the ketogenic diet will be getting an ultrasound of their gall bladders beforehand. Liam did that, and that alone is worth the risk. Maybe the next kid wouldn’t have been as strong as Liam is. He has helped to make sure that other kids don’t need to encounter this problem in the same way. That means something too.

Karin and I brought our healthy boy into the hospital for a week to try the ketogenic diet hoping it would reduce his seizures. A 33 day hospital stay, crazy complications, twice daily injections at home, and we are right back where we started. Only Liam won’t allow me to think that it was all for nothing. It’s his strength that gives me the courage to try whatever we can do to improve his medical needs. Along the way, connections are made that show me how much Liam means to nearly everyone he meets. It’s those connections that I hold on to when I wonder if I made the right move. If it was worth the risk.

It hurts like hell, but I still think that is was.