Category Archives: Uncategorized

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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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.

Staying Ahead

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It’s hard work being five years old.

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

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

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

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

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

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

A Month?!

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

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

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

It’s time to make a change.

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

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

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

We’ll see.

Five years

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Today is Liam’s 5th birthday.

Fifth.

I don’t have any words.

I have all the feels. I have a whole bunch of happy tears. I have more pride in my little fighter than I thought humanly possible.

My Big Boy.

My five year old son.

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How the hell did that happen?

Clam Alley at Christmastime

Many of you, my wonderful readers, are close family and friends and so are well aware that my dad is a pretty talented guy. A painter, an illustrator, a professor, but I think most important to him he is a potter. As hard as he works making beautiful pottery, he has neither the time or the patience to fiddle with a blog or twitter, constantly taking and uploading them, or messing with the settings of his Etsy shop.

So instead, Karin and I will take care of all of that stuff. This way he can make pottery and we can take pictures and videos. We can start a twitter account and maybe an instagram, and we can maintain his news blog and let you all know where you can get your hands on some of the finest hand-made pottery around.

If you would be so kind, please visit Clam Alley News. While you are there maybe leave a comment. It will let my dad know that increasing his online presence is a worthwhile endeavor. Over the course of the next month or so we’ll be adding things like informative videos, a whole new online store and other informative sections to a new website to give everyone a better idea of what Clam Alley Pottery is all about.

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Thanks, and now that I’ve bragged about my dad I can get back to using this space to brag about Liam. Talk to you soon.

Necessary Evils in Three Parts.

It sucks. It sucks in every way that you would think that it sucks and in about a thousand ways you couldn’t even imagine until you’ve been there. It sucks in ways that even those closest to us won’t fully understand and those farthest away can’t even comprehend. It sucks to need home care nursing.

I’m not going to try to find a better word for it. It just plain sucks.

It sucks to feel like your ability as a parent is being called into question when you’re told that you will need home care nursing before you have even gotten your child home. To feel as if you can’t take care of your own child as a family. That someone needs to be paid to come in and help. It sucks even worse when you realize that it’s true. That although we are perfectly capable of taking care of Liam, and he is much safer in our care than anyone else’s, that the 24/7 grind of seizures, and ventilators, and feeding pumps, and medicines, ultimately will wear us down to an exhausted mess.

It sucks to have a stranger in your house. I like my privacy. I like relaxing and being comfortable in my own home. If I have to behave in any guarded way in my own house I get cranky. It sucks when the only nights you get to share a bed with your wife are the same nights that you have someone who is essentially a stranger sitting awake one floor below. It sucks to have to whisper. It sucks to worry that if you raise your voice in an argument the rest of the nursing company might hear about it. It sucks to have a small cozy home with only one bathroom that shares a wall with Liam’s room after burrito night. If a man can’t be comfortable on his throne where can he?

It sucks to worry anyway. To spend shift after shift watching a new nurse, hovering in the doorway, or laying awake overnight listening for ventilator alarms negating any relaxation they are there to provide. To meet 5 nurses who seem barely competent for every one who instills any confidence. To then lose the good ones to office politics, or geography, or a cat allergy and then wait months for the agency to hire someone with the training that Liam requires. To then have the insurance company cut back your hours for lack of use, not really caring that it was because the agency didn’t have anyone hired and not because we didn’t want them.

It sucks to have to run my own family’s plans through a nursing company scheduler who has no understanding the impact her job performance has on what we as a family can or cannot do. To be given attitude and lectures for changes or demands. To be scolded for discussing scheduling changes with the nurse that it would affect because it disrupted some kind of office protocol.

It sucks to have to compromise. To have to take a chance on a nurse with little experience in a trade for respite and a bit of sleep. To have to weigh a bargain between our own well-being with Liam’s safety. To have to settle for whoever decides to answer the want ad in the paper when most of the nurses go on to hospitals, doctor’s offices and other institutions.

It sucks to find that perfect nurse. The nurse that just fits. The nurse that while having the skills necessary to care for Liam also has the personality to understand our plight, our privacy and our need for respite, not more stress. It sucks to find that nurse and lose them to another job or their own family obligations. It sucks to have Liam’s school schedule be impacted  by that perfect nurse’s schedule. To worry every time that Liam is admitted to the hospital for a long-term stay that they will be forever lost to another case, because it is just a job to them. They can’t be waiting 6 weeks for Liam to come home to work.

It sucks to have this nagging doubt because of their looks or questions when talking to acquaintances and co-workers about nursing that they think it must be so easy. That having “free” “babysitters” every day means Karin must have so much time for herself. It sucks to have it come up in conversation at all. People who’ve never seen it don’t understand. It sucks to know that some of the nurses themselves don’t even understand. I know it’s your workplace, but you are in my home!

*****

For four years we never had nursing on a Tuesdays.  Frustrated by watching nurses care for Liam in the hospital the first 9 months of his life, we decided soon after taking him home that Tuesday’s would always be Mommy and Liam days. But we also wanted Liam to eventually attend school five days a week and so Tuesday nursing was needed.

We had nursing on Tuesdays for less than a month about two months ago. I’m not so sure we will again anytime soon.

Just when we thought that having nursing couldn’t suck any more a new level of sucking rained down upon us when Karin stepped out of the shower to hear her name being called and Liam’s ventilator alarm beeping loudly along. Charging into his bedroom Karin found Liam’s nurse, her third week on the job with us, frozen in panic with tears of fear in her eyes. Liam lay in his crib blue and unresponsive. Within seconds Karin had shoved the nurse out-of-the-way, assessed the situation, put Liam’s trach back into place, hooked up the ambu bag to direct oxygen and revived her son. In front of the licenced professional being paid to allow my wife time to do things like take a shower. Every day since I think about how lucky we are that Karin was only in the shower and not out grocery shopping or picking up Liam’s prescriptions.

The nurse still in a panic and unable to think of what to do next, Karin sternly told her to call 911 (so that the paramedics could come out to asses if they thought there was any lasting effects) and then to get the fuck out of our house and never come back since you almost killed my kid. That action the nurse was able to do. So quickly in fact that she left behind her glasses, and was to afraid to ever ask for them. (we sent them to the agency for her anyway).

I’m not mad that Liam’s trach popped out while she was changing Liam’s trach ties. It happens. It’s happened to anyone caring for a kid with a trach. I’m mad that this “nurse” didn’t know what the procedure was for its (inevitable) occurrence. I’m mad that the nursing agency’s training program saw her as able to care for a child with medical needs as complex as Liam’s. I’m mad that my wife has gone into sweats and relived the moment that she saw a blue and lifeless boy in Liam’s crib every time she hears his vent alarm go off and she isn’t in the room. I’m mad at how hard it is going to be to try to trust a new nurse ever again. I’m mad that even though I called their office  from my own to tell them why that nurse would never be going anywhere near my child again, no one from the agency ever called to check on Liam. To check on Karin. To tell her that they were sorry for the pain, and stress that this has caused. I’m mad that there is a file in that office somewhere that has notes on whatever story that nurse gave when she went back to the office but doesn’t have a single word of what happened from my wife’s point of view.

I’m mad.

I’m mad at the amount of guilt that both Karin and I have beat ourselves up with. That maybe we should have been a bigger part of her training before realizing that if you say you can care for a trach/vent patient you should already know how to check whether or not a trach is even in place. I’m mad that my wife now feels guilty at the thought of leaving Liam with anyone else even more than she did when he was a baby. I’m mad that I didn’t notice something in that nurse’s first three shifts to red flag me to fire her  before anything like this could ever happen.

And I didn’t think I could get any angrier.

*****

Then a news story came up last week. If you don’t want to click-through to the link I’ll give you the highlights.

According to police, a Cranston couple went out for dinner Monday night and left their nine-year-old disabled son with a caretaker. When watching the child through the home video monitor on their cell phone, the couple discovered the caretaker reportedly abusing the boy.

….

According to two Cranston officers who viewed the footage, the video showed Faneuf grabbing, shaking, and twisting the child’s left arm while he was lying in bed. It also shows her grab the child’s head and the side of his body, sit him up, then slam him down on his back, police said. The video also showed her hastily wiping the boy’s face.

When the couple examined their son they found bruises on his forehead and arm as well as a blood spot on his eye, according to police.

It’s a story that made me sick to stomach. Sick to my stomach before I saw the mug shot and read the name and recognized the nurse as one who had cared for Liam two night’s a week for three or four months last year.

Liam is fine. He is doing well with his therapies. He is more aware and alert as he has ever been. He is growing like a weed and medically as stable as he has ever been before. Let’s just all keep that in mind because whenever I think about this situation, I keep having to remind myself.

We never saw anything suspicious or any signs of abuse. She has not cared for Liam in almost a year.

Liam.

Is.

Fine.

But what did we miss during those four months? Upstairs, selfishly trying to get a full night of rest with my wife? Did anything like this happen to Liam but we never knew? Liam can’t tell us where it hurts in the morning. He can’t tell us if it hurts at all. Were there signs that we had missed?

(Oddly enough, at the time Karin and I had decided while she was on a vacation week to fire her from Liam’s case because we didn’t think she was making any attempt at connecting with Liam at all. As if he was just the inanimate object she had to watch for eight hours. It was enough that we didn’t mind sacrificing the weeks of sleep we would do without waiting for her replacement. The agency let us know that she had put in her notice with our case anyway. That she was moving on to a case closer to her home. Well that worked out, I guess.)

And  that’s were we are. I don’t know what to do next.I don’t know how to process what could have happened because I don’t know that anything did. I’m angry at the thought that it might have. I’m angry that it may have been going on and we weren’t there to protect Liam, since he is unable to protect himself. I’m angry that monsters who would be willing to do anything like this to any child let alone a disabled child unable to protect themselves or run, or scream, even exist and that someone who may be capable of it was in my home.

We are down to only one nurse now. Luckily, this one is that perfect fit. He connects with Liam, He connects with us (just as important) and he is wonderful with Liam at school, constantly encouraging and ensuring play and interaction with all of the other students, but he can only work so much. We have no more night nursing and, well, there’s that Tuesday shift. We will have to take on a new nurse at some point whether it’s for a few nights a week so that Karin and I can sleep again or so that Liam can go to school all week which is still the ultimate goal.

I just don’t know if I can do it. I don’t know if I can put on a fake smile and meet someone new. To trust another nurse. To trust the agency when they say, “oh, she’s/he’s a great nurse, lots of experience.” To explain why it does matter if Liam’s circuit lay upside down (moisture collects in the sensor tubes) or why his cuff needs to be deflated when he fits his Passy-muir valve (closes off the air around his trach with a one way valve and suffocates him) and why we don’t want diastat given at exactly five minutes of seizure length no matter what your nurse’s notes and the orders in the chart read (many of Liam’s seizures will resolve on their own when allowed. If it’s getting stronger at 5 minutes then of course but there are shades of severity that can be hard to explain).

I don’t have the energy for it. I don’t have the trust for it. I don’t have the words or the inspiration to turn it all into a happy ending or a moral for patience and perseverance. Instead, I have a whole lot of anger and resentment towards it all and I was hoping that writing about here might help with that.

I guess well see if it does.

Like I said, it really sucks to need home nursing.

The Babysitters Club

It was only a few minutes. Barely half an hour as a matter of fact, but someone had to go get the pizza. So we took the long way across town, both of us, together. Without child.

No calling the nursing company scheduler, no need to involve the insurance company. No advanced degrees or scrubs anywhere. Just two grandparents watching their grandson while his parents left the house for a little while. It was the first time it’s ever happened.

There’s a few things left for them to learn and they still haven’t changed a trach all by themselves but my mom and dad have worked so very hard over the last 5 or 6 months to learn how to care for Liam so that they could babysit. Check out the picture that my mom sent us while we were gone, they don’t look nervous to me.

We won’t be hitting the cape for the weekend or even catching dinner and a movie just yet, but running cross-town for a couple of pizzas was a cool first step.

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The short stay that we wanted.

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We’ve never taken Liam home from the hospital while he was still “sick”. 40 day stays seldom end with discharge if there is still the hint of infection, so we were slightly surprised when the word to break free came on Thursday afternoon. Not that we complained or did anything to stop it mind you, but slightly surprised nonetheless. The attending doc who discharged us was right when she commented that once the seizure that brought us into the ER had been stabilized the remaining symptoms were not enough to keep us in the PICU. Since heading upstairs to the non-ICU floors is not really an option for Liam it was only logical to send us home. I believe her direct quote was actually “there’s nothing here that you guys couldn’t handle.” She’s gotten to know us pretty well over the years.

Still, I’d be lying if I didn’t say that these last 24 hours hadn’t been tinted with more than the usual amounts of stress and worry. Barely 30 hours after getting home Karin and I still find ourselves waiting for the other shoe to drop, for one of these mild symptoms to send us bouncing back into the PICU just like we have so many times after a hospital stay.

******

I blog more when Liam is in the hospital. It’s a great way to let family and friends know what’s going on but it also gives me something to talk about. Something in the present because lately I’ve been focusing more on our past.

A few months ago I told you about a presentation I was writing about our story. I’m happy to report that it went well. Very well in fact and I have been asked to do another. Tuesday I will be the keynote speaker for the Women & Infants Hospital Schwartz Center Rounds. (You can read more about Schwartz Center Rounds here). After speaking for 15-20 minutes (no small feat in itself, that first presentation I went on and on for almost 45!) Karin and Liam and I, with the aide of a facilitator, will answer questions as part of a panel discussion for an audience of doctors and nurses, who will receive continuing education credits, along with other caregivers and hospital staff.

It’s kind of a big deal.

It’s why I have been focusing so much on our past. On Liam’s time in the NiCU. On the impact that nurses and case managers, and therapists have had on our family and its development.

It’s why along with meditations on our past there have arisen very new and exciting thoughts about our future. About my future. It may have taken me 35 years but I think I may have finally figured out what I want to be when I grow up and that it has something to do with writing and speaking about patient advocacy.

And it’s why I shouldn’t be blogging any of this right now. It’s all time that I should be working on my speech.

Thank you all for the thoughts, prayers, and well wishes this week when you heard that Liam had been hospitalized. Getting all of those tweets and comments and emails is another reason why I blog more when Liam is in the hospital. It’s nice to know there are so many people out there who care about us. It means more than you all know.

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Never a dull moment.

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I didn’t even hear the bang. Or if I did I just thought it was the cats knocking something over or jumping off a table so I don’t even know how long she was sitting there. The drunk neighbor who missed the road by about oh, 25 feet and instead decided to drive right into my front yard.

Everyone is fine. Well, everyone here is fine, your guess is as good as mine on her condition right now. She wasn’t looking very good when the cops put the cuffs on her and tucked her into the back of a squad car. Not injured from the crash at all, she couldn’t have been going that fast, I would have to say though that she’s probably had better nights.

The tow truck was quick and by 4:15am all the excitement was over, leaving a house full of wide awake Olsons, which wouldn’t have bothered me in the least had it not been my weekend to work.

Had she been heading a few feet over in either direction she would have slammed into Liam’s van on one side or torn Liam’s ramp clear off the house on the other. It could have been so much worse. Fixing a fence post and possibly losing one of my rose of sharon plants is actually the best case scenario. Well, aside from not having my property driven into by a drunk driver of course.

So anyway, that happened. It’s always an adventure around here I tell you. Now I have to go finish start writing another speech. I’ll tell you all about why soon.

New Routine

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We go for walks now. All three of us. Everyday.

For the past 7 years I have had to work until 8pm at the earliest. There wasn’t any way for me to go out for a walk around the neighborhood in the sunshine. Then in November I got a promotion and was able to get home by 6 almost every night. A welcome change but being November it would still be another 5 months before I would get to enjoy the feeling of leaving work able to enjoy even a little bit of sun.

I used to come home from work with barely enough time to eat dinner before Liam would fall asleep. Now I come home with hours and hours to play with before bed time. We’ve got a new routine now.

We go for walks.

All three of us.

Everyday.