Understanding that families do come in all shapes and sizes, who among us don’t remember hearing some version of it?
“You go to your room and you just wait until your father gets home and hears about this!”
Being told when Liam was only three weeks old that he’d never reach the developmental level of even a toddler, I never thought we’d have to use that phrase in this house. I knew then that he’d prove them wrong and boy has he, but discipline is one of those “universal” parenting skills that held little importance for us.
“There are no spoiled kids in intensive care units” people in the NICU and then the PICU say, and for us, once we brought Liam home, it became “there are no spoiled kids on ventilators.” And it worked, for a time. As long as he was breathing, Liam would not hear the word “No” or “now” or the phrase “because I said so” until he was almost four years old.
So it’s our own fault really. Don’t let that cute smile fool you. Liam can be just as much the brat that any other five-year old can be.
Truth be told, I couldn’t have been prouder to hear that Liam had been pulled from his classroom and into the hallway by his teacher to discuss why he was misbehaving in class. The kid who would never be able to communicate. He almost got a Yellow Card (and we all know you don’t want something like THAT on your pre-kindergarten permanent record). But of course it wasn’t in the fact that he was ignoring his teacher and not participating in his schoolwork but in the how he did just that.
Among Liam’s many super powers is his ability to avoid obligations (dr.’s appointments, physical therapy, occupational therapy, speech therapy, family functions) by sleeping or pretending to be asleep. He hasn’t realized yet that his heart rate monitor betrays his brilliant performances every time. He does it because it works. This time though, Liam decided to push boundaries by actively, alertly, and fully aware of his surroundings and behaviors, refused to make eye contact with his teacher and moving his head around in an effort to NOT look at the activity she was presenting to him. Non-compliant and proud of it, in every way that a non-verbal, low-muscle-toned five-year old brat can be.
Let me be clear, Liam loves his teacher. He perks up when she is around and the work that she has been able to do with him has been absolutely staggering. It’s in that love and respect that I think lead Liam to push those boundaries as far as he could. It’s because of her love and respect for him that I think she pulled him out of class to discipline him. Ventilator or no. seizure disorder or no. Global developmental delay or no. Liam is held to the same standards of effort and participation as all of her students and if she were to let him slide because he was cute. Or because he has special needs she is doing him no favors.
The concept of obligation is a tough one to teach. But it’s a lesson every one of us needs to learn, so when I got the full report from Liam’s mom on my return from work at the end of the day, Liam and I had a nice long talk. A talk about respecting the teachers and the adults in his life. About work, about effort and participation. We talked about what he did wrong, and what he needed to start doing from now on. I didn’t have to work to hard to figure out what to say either. Most of my own “wait until your father comes home” moments came on report card day, where I would get a lecture about work, about effort, and about participation.
The next day I was home from work and was able to go with Karin to pick him up from school. His teacher came directly over to us as he and his classmates exited the building. ” Well thank you for whatever you said to him last night. He had an EXCELLENT day today! He worked so hard with me when I asked him to.” she told us.
I guess he learned his lesson. Must have been that whole afternoon spent with the guilt and the anticipation of a punishment of some kind.
Just waiting for his dad to come home.
Karin is asleep in our bed.
Liam is asleep in his bed. The gaseous results of his recent formula change rumbling over the baby monitor to the living room and wafting their way across the whole first floor.
I’m on the couch. Listening to Liam’s breathing (and farting) pattern over the monitor and laughing to tears at old Cheers episodes.
1:30am on a Wednesday. It looks a lot like any other night at 1:30am at my house.
Smells the same too.
He’s lucky he’s so damn cute.
At the end of June the Women & Infants Hospital Community Partners Workshop will be holding a conference called Dads and their Families: The Struggles, Triumphs & Supports of NICU Dads. I know this because I have been asked to be the event’s keynote speaker. It’s my first paid speaking engagement so if you were hoping to grab me to speak to your group or organization you missed your chance at getting all this for free. Now it’s going to cost you.
Later in the program I have also been asked to sit on a panel alongside area experts and staff from the state DCYF, and non-profit agencies. The panel is focusing on resources for dad’s. Oddly enough the event’s organizers don’t want me there to speak as Liam’s dad. They’ve made it clear, for the panel they want Eric Olson, writer for PressureSupport.com. I’ve officially done it. I’ve fooled you all into thinking that I actually know what I’m doing. Ha Ha!
When faced with the decision to have Liam trached, Karin and I were understandably terrified, but we knew the science. We knew all the medical reasons, and the surgical reasons. Pulmonogists and respiratory therapists alike had already commented on our understanding of the issues that Liam faced to get home. We knew it was the right thing to do. In a hospital. In an intensive care unit. What we didn’t know was how that actually worked on the outside. How do you put that into practice? What does living at home with medical equipment look like? Should we get rid of our cats? What if the wiring in my house couldn’t handle the power needed for a vent and humidifier, and feeding pump and suction rig? How do we keep the house clean enough for this? Would we have to get one of those tents like they did in the movie E.T.?
The universe, in its abundance, sent us a sign. They sent us a family with an eight year old boy who had been trached and vented all of his life. Across the PICU pod and in the hospital for a routine bronchoscopy (all kids with trachs do it 2x a year, Liam just had his most recent bronch last tuesday). In the way that nurses do in a hospital, without breaking any privacy policies, introductions were made and we were able to chat with parents who had been there. Parents who didn’t have a bubble built around their house. Parents who were wearing jeans and t-shirts — not lab-coats or nursing scrubs. Parents who looked tired but not haggard. Stressed maybe but not strung-out. An ordinary family living an ordinary life.
That first conversation wasn’t even very long. Only a few questions and it wasn’t the actual responses that struck me but the almost calm nonchalance of it all. The impression given that there really wasn’t even anything worth talking about. “I don’t know what to tell you man.” I remember the dad telling me “There’s really not much to it other than changing the plastic parts, and when it alarms you do what it says, by the time you get home, you’ll know what to do. If he needs suction, you suction and you hardly even remember that it’s there. It’s what we needed to do to get him home and out of here.” I’m pretty sure after that answer we just started talking about the Red Sox. A few hours after that conversation, after days and days of discussion, we let the attending doctor know that we were ready to proceed. Liam’s tracheostomy would come a few days later.
A month and a half after that, this blog would be born.
Not every family gets another family across the pod in the PICU. Not every family gets someone to talk to. It is my hope that this blog can be that family for someone else, and thanks to all of the emails and comments from many of you I know that it has been, but I’ve gotten away from that mission for this space. Lost in the twice monthly 1500 word essays are all of the boring, everyday moments that make life with Liam, just that. This life, with Liam. It can be exciting, it can be sad, it can be as happy and as frustrating as any other life. When trying to imagine this life I needed to know that this was possible, hopefully, in sharing all it here I can show someone else who needs to know that it can be done.
So get ready. I’m going to work on showing you more of the boring stuff. The nitty-gritty.
Karin has been telling me that what I’m missing are the little pieces inbetween the 2000 word meaningful essay and the 140 character tweet lie the sweet spot of really getting to the little things. Postlets she calls them, and I think she’s right. So it’s time to start stealing that idea. (why not, I steal most of her photos for the blog anyway. like the one below.)
Postlet the first: Yes, if you read my twitter feed you would have seen that Liam was in the hospital this week. Liam is fine. He had his routine bronchoscopy. The ENT surgeon likes what she saw, things went well and all the overnight blood tests during his vent assesment were perfect. Today marks a full month since Liam has had even a whiff of supplemental oxygen. The longest span without bottled oxygen in his life. Confirming that with blood gases while he was int eh hospital was wonderful.
I’ll talk to you soon.
Like I do every weekend morning I found Karin and Liam asleep in Liam’s bed last Saturday morning when I woke up. Unfortunately it had only been a short while after they had finally drifted off.
“We didn’t have a very good night.” Karin said when she woke up. Liam had been pretty restless for me the night before too. He spent the night looking like he was just about to sleep but something was keeping him from getting there. I thought he had finally gone out at 4am when Karin and I traded posts. I guess I was wrong.
“I had to spray him.” She said. It wasn’t the way I wanted our weekend to start.
The Spray. The versed (or Midazolam) sprayed into the nose to break the really strong seizures. It’s our antitode to the storms that Liam can’t break on his own. We also have Diastat if the versed doesn’t work. It’s rare to see Liam cry because of or during a seizure. He has however cried every time the nasal versed nozzle is placed up his nose and the first mist given. Whether the long-term side effects of his daily seizure prevention meds, or the short-term emergency meds we use to stop them when they can’t be controlled, it isn’t the seizure that he seems to feel the pain of, it’s the cure.
We’re in a good place with his seizures now. The reason that hearing he had gotten sprayed on Saturday hurt so much was because he hadn’t needed it in weeks. Before that it had been months. There have been times in Liam’s life where we have had to do that three and four times a day. When the seizure minutes in a day outnumbered the seizure-free. The hard part is knowing that those times may (and probably will) return.
Even when you find a regimen that works, weight gain makes renders it fleeting, or the side effects of long-term use set in, or tolerance builds and effectiveness wanes. New meds are tried, new risks are weighed. Seizures change. They evolve. They break through. New meds are tried, new risks are weighed.
It’s easy to fall into the trap of thinking that we’ve got this thing all figured out. That we’re the grizzled old veterans of this special needs game. The wibbly wobbly timey wimey aspect to months and months spent in the hospital making them seem like dog years of parenting, every month feeling like seven. We’re only rookies to the sport though. Liam hasn’t even started kindergarten. Which is why I truly value the friendships we have made both in real life, and online from all over the country, with families who have children in their early teens all the way to early twenties with special needs, to show us the way through the big leagues, to be Crash Davis’s to our Nuke Laloosh.
I’ve mentioned her here before so I expect that every single one of you listened to me and have been reading my friend Elizabeth’s blog here. Reading her blog in all its honesty makes any reader feel like you’re already her close personal friend, and of all the many friends around the world that this blog has given me, Elizabeth is the only one who I have ever spoken to on the phone. I don’t email or comment on her blog nearly enough but she’s always there with a kind word or a witty joke on mine, (along with just the right amount of profanity when the comment needs it). She’s good people.
Elizabeth’s daughter Sophie has recently had a stretch of two weeks without a seizure. It was the first time that has happened in 19 years. After a lifetime of many different (at least 17 if I recall reading) powerful drugs with serious side effects, Elizabeth and Sophie have found something that has helped bring her two seizure free weeks for the first time in 19 years. I know I said it already. It bears repeating.
I don’t know what 19 years of this feels like. I know what 5 years of this feels like. I know what two weeks feels like. I know what ten minutes feels like. The ten minutes between looking at the clock when it starts and deciding to push down on the nozzle for The Spray. I can’t even imagine what 19 years of this feels like. I don’t want to.
But maybe I won’t have to know what 19 years of this feels like. Maybe, thanks to people and families like Elizabeth’s sharing their own stories on blogs, radio and TV interviews, and newspaper articles like this one featuring Sophie, our nineteen years will have greater access to a better way to keep seizures away. A simpler way. A safer way than the harmful drugs I continue to give to Liam every day. It’s not science that is holding back the research, testing, and access necessary to give Liam more relief from his seizures in this lifetime. It’s politics. It’s not because it doesn’t work that we haven’t heard real statistics and started spreading it to every child or adult that it could help, it’s because insurance and pharmaceutical companies haven’t yet figured out how to monetize it.
Luckily Liam, Karin and I happen to live in a state where medical marijuana is legal. Luckily, we have a relationship with Liam’s amazing neurologist in which I won’t feel uncomfortable bringing up our interest in this (seriously, we have assembled a pretty kick-ass team of specialists around Liam but his neurologist is like the all-star, and we’re not at a point yet where we would jump into this without his blessing and help). Luckily we have friends like Elizabeth who show us the uncertain road ahead by taking the time and effort to turn back for us and let us know how they got there.
I fear running out of options. I understand that Liam will always live with seizures. When the devastating side effects get to be too big a risk, or his tolerance grows too strong for all the drugs that used to work. What then?
Well you see, luckily,there’s this plant… Listen, I’m not saying we’re going to run out tomorrow to try to score Liam a big bag of grass and see what happens, what I am saying is that it’s another option and knowing what I know now, Liam won’t have to wait 19 years to try it.
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.
If you follow me on twitter or Instagram then you’ve already seen this picture but I just wanted to put this one here for safe keeping.
Liam likes to close his eyes if he feels a breeze. He was wide awake for this one waiting to get inside before school started.
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.
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.