Tag Archives: special needs

Why I probably won’t be mad if Liam grows up and tries marijuana

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.

 

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.

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Feel the breeze.

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.

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Liam’s Tea Roses

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

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

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

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

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

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

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

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

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

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

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.

 

Playing Hookie

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

Yesterday, we all went to the zoo.

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

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

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

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

Liam’s bedtime friends.

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Pictured from bottom to top

Pulse oximeter probe

Plastic tubing from Nebulizer

Power cord for oximeter

Power cord for ventilator

Power cord for in-line humidifier

Power cord for nebulizer

The Circuit

Feeding tube

Power cord for feeding pump

Power cord for suction rig

Suction tubing

Dirty rug. No really, go ahead and tell me how dirty it is. It’s bad enough that Karin is going to kill me for posting this. Try me.

People often ask us how we do what we do.

Very carefully.

Me? I pretty much consider it a success anytime we don’t trip on something.

 

Being sure.

I think about the conversation nearly every day.

The seemingly scatterbrained geneticist with her big huge textbook on chromosomal trans locations. 20 hours earlier we heard the word lissencephaly for the first time. Only minutes earlier we heard the term Miller Dieker Syndrome for the first time. Karin and I sat nervously on the NICU “family room” couch. A two week old Liam lay in his isolette 30 feet away.

“I have some here if you’re sure you want to see them ” she grasped the textbook and slid her fingers to the page marked by the post it note sticking out.

“See them?” I asked. We were talking about chromosomes. We were talking about my son. About “abnormalities. About life expectancies. I didn’t need to see charts or molecule diagrams at that moment.

“Well, pictures of other kids who have the same diagnosis. So you know what your son may look like due to the syndrome. If you think your OK with seeing them I can show you some pictures of children up to a few years old. ” she said it just like that. Clutching her book and waiting for us to decide, as if what were about to see would have us heading for the hills.

I don’t have any idea how hard it must be to be a geneticist who’s job involves telling brand new parents the kinds of things that are “wrong” with their kids. Things that, though could not have been prevented, bring tremendous guilt since it came from within themselves. How difficult it must be to choose your words. To decide how to frame the conversation without setting expectations too high or low. I don’t envy her position in this.

Karin and I looked at each other for a second both nodding that we were ready for whatever we were about to see. We grabbed each other’s hands and told her we would like to see the pages.

The geneticist opened the book first to herself and then turned it around toward us. We looked on in silence. Looked back at each other and back toward the book and its pages again.

” I’ll leave you two alone for a few minutes to look at the pictures and I’ll be back to answer any questions you may have.” She excused herself without a word from either Karin and I who had now flipped through the four page textbook entry that included about a dozen photos.

“Uh,…” Karin seemed to be choosing her words carefully. “Um, what am I missing?”

I knew exactly what she meant.

“These are the cutest kids I’ve ever seen! Why did she make us decide if we were sure we wanted to see this. What am I supposed to be seeing here?” She said with relief in her voice.

“Well it says here, pronounced forehead, shortened nose, widely set eyes. I don’t know, they look like kids to me.” I said.

I remember laughing. Us both laughing. After twenty hours of mostly tears we had no idea what our future would hold. We had no idea what a life with a Miller Dieker kid would be like. We had no idea if Liam would even make it home from the hospital.

But we still knew what was funny.

And when a scatterbrained geneticist worries you into thinking your child’s head is going to end up growing inside-out but then shows you pictures of a bunch of adorable two year olds, well …that’s funny.

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I think about that conversation nearly every day.

Whenever I see a picture of Liam and marvel at how incredibly adorable he is.

Whenever I look at him and marvel at how handsome he is.

Whenever I’m amazed at how I could have possibly had any part in making something that looks so …

Perfect.

And now I ask you, are you really sure you want to see them?

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Not just a pretty face

Like most parents of 5-year-old children we get a lot of arts and crafts projects sent home in Liam’s backpack. Most of them obviously the result of “hand over hand” writing and crafting. That’s ok with us. We came to grips early in Liam’s life that he wasn’t going to be making us any crafts or writing us any letters.

We picked Liam up from school about fifteen minutes early on friday so that we could take him to a doctor’s appointment. Liam’s nurse barely had him out of the doorway when he started he shouting at me. “He did such great work today! He worked so hard! Wait until I show you what he did in class today!” Liam’s nurse is not the most excitable gentleman you’re likely to meet and so the enthusiasm was evidence in and of itself of the importance of what we are about to see.

I can’t tell you how much class work we end up finding ourselves when going through Liam’s backpack long after his nurse has gone home from the day. Not only did he want to show us this work, he started showing Karin and I this page in the van, before we even had the tie-downs on his wheelchair secure.

“It started with this worksheet.” He told Karin and I while we secured Liam’s wheelchair. “He was doing some hand over hand on numbers until he did this number one all by himself!”

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“That’s when [Liam's teacher] got really excited and ran to get some more paper. She wanted to see how far she could push him and the only support she gave was to keep her hand at his elbow so his arm would stay on the table and not fall off.” He was speaking faster than usual now “The marker stayed in his hand on his own and he moved his wrist and hand on his own.”  That’s when he pulled it out of the bag to show us.

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From left to right. 1…2…3…4…5.

You might not see it. and you know what, I’ll admit that the 4 might be a bit of a stretch but it looks pretty damn good to me.

It’s things like this that Karin and I wish we could show to every doctor and resident who saw fit to tell us everything that Liam wouldn’t do. Everything that he’d never accomplish. Everything that’d be impossible for him to learn.

Because as a close friend who also is a parent of a child with some special needs often tells us — Everything is possible — the impossible just takes longer.

*****

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Liam and his best buddy W, the nurse I mention above. The photos are selfies that W has taken and shared with us. It would be a HIPAA violation for him to share them in any other way. But not if I do.

Liam’s Mom Won’t Take Any Sick Days.

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

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

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

Only this time…do it alone.

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

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

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

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

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

She is incredible.

Unbelievable.

And amazing.

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

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

I didn’t do it by myself.

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

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

******

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