For almost ten years I’ve called Evelyn a friend but I suppose acquaintance would be more accurate. Walking past her desk every morning on my way to my own our talks would range from 15 second hellos to 20 minute complaint sessions about the Red Sox. She even took these photos, as we passed her desk on the day Liam was discharged from the NICU. (I wrote about that day and these photos here.)
For ten years I’ve called Evelynn a friend. After yesterday, and what she and her family did for Liam, I feel like I should call her family, and I don’t know if I’ll ever be able to thank her enough.
“Hey Eric, have you taken Liam to get his picture taken with Santa yet this year ?” She asked, the beginning of last week, as I made my way into the office.
“Hmmm, No. Actually Liam hasn’t ever met Santa Claus yet, we just can’t wait in a germy line of kids at the mall or anything. Someday though, and he’s almost 6 years old now so soon I hope.” I explained, but Evelynn asks about Liam every day. She knows the deal.
“PERFECT!!” She shouted ” what are you doing next Saturday? You have to come to my sister’s house.” She picked up the phone in front of her and held a finger up to make sure I didn’t walk away. “Yeah, it’s me, what time on Saturday? Liam is going to come….. Liam!, that kid I was telling you about. His family is going to come on Saturday. Ok. I’ll let him know.” She hung up the phone and that was that. On my way into work on a monday morning I somehow had made plans to go to someone from work’s sister’s house for dinner on Saturday night. And I still wasn’t exactly sure why.
Evelynn had to explain.
If we came to her sister’s house on Saturday night, Liam would finally get to meet Santa.
Evelynn’s sister’s family had had her own children’s pictures taken with Santa and Mrs. Claus at a local restaurant from when they were infants until they were in college. With all the kids home for the holiday this year they had hoped to continue the tradition with a picture of their nearly adult children but the restaurant now closed leaving them without a place for Santa to see them this year. Until Evelynn’s sister had run into Mrs. Claus somewhere shopping. Mrs. Claus explained that Santa would be happy to stop by her house to take the picture, and a date was set. Plans were made.
Santa was coming, and by Evelynn’s thoughtfulness, and her entire family’s boundless generosity, it turned into one of the most magical evenings of my life.
We arrived a little early, and after getting Liam’s chair up the portable ramp we travel with, introductions were made. Introductions made so warm and comfortable that we were instantly set at an ease of familiarity among a group of strangers and one acquaintance. No one asked about Liam’s chair, or his syndrome, or his wheelchair, but each and every one of them pinched his cheeks, and said hello, and told him how handsome he was. A house filled with relatives and lifelong friends who instantly treated us as one of their own.
And when they all heard that Liam had never before met Santa Claus, the entire party seemed to change from a oppurtunity for them to relive old family traditions to a celebration of their part in starting a new one for us.
And then Santa arrived and met Liam.
Along with Mrs. Claus and their elf helper Tiny, Santa was able to stay for about 45 minutes. He sat, holding Liam’s hand and whispering in his ear for easily 35 of them. Concerned that we were monopolizing Santa’s time too much, many in the room with their own camera’s firing away and with joyful happy tears in their eyes waved away my concern telling us and Liam to take as much time as we wanted. They would ultimately get their own pictures taken but their patience and interest in being a part of Liam’s first exposure to Santa was truly a testament to the power of the Christmas Spirit as hokey and Charlie Brown Christmas as that may sound.
Liam had slept for almost 22 hours that day. A rough end to the week with seizures induced a medicine change on friday night which wiped him right out for most of Saturday. Most but not all, for when St. Nick was whispering in his ear and holding his hand, Liam was wide-eyed and alert, engaged in communication and tugging for dear life on Santa’s beard with his free hand. Liam won’t tell me what they talked about. He won’t even tell me if Santa told him if he’s on the nice list or not. Whatever Santa had to say to Liam will always stay between them. I like that.
After Santa had to leave and get back to his busy week-before-Christmas schedule, we stayed and we ate dinner and we got to know everyone a little better. When they found out that Liam’s birthday is the day after Christmas the whole group of our new friends sang Happy Birthday to him. We left happy and to invitations for future plans including a repeat holiday visit next year if possible, and as we made our way out the front door and down the ramp the first snow of the season here started sticking to the ground.
It was downright magical.
The magic of friendship, the magic of a kind and open-hearted family, and the magic of Liam’s positivity and love.
But, I think most of all, it was the magic of Santa.
The morning after the events of my last post Karin and I still didn’t know what was going with Liam’s first day of school and whether or not he would be afforded the orientation process that all the other incoming kindergartners were having. I had been hoping that after hearing the messages I had left the day before I would have recieved a call early in the morning but when I didn’t hear anything by 9am I knew that wouldn’t be the case. So Karin and I went to the school to park ourselves in front of the principal’s office until we could speak with her about our concerns. The school pre-k program social worker (poor thing) didn’t have any idea what she was in for when she walked by and waved hello.
“Can we talk somewhere, right now?” I asked.
Anyone who knows Karin and I knows that we are not confrontational people, but when it comes to the full throated advocacy for our son and his needs we will be as confrontational as we need to be, and we have a lot of practice. The medical field has trained us well with, daily rounds in the intensive care unit, family meetings, and the lifelong coordination of multiple specialists Karin and I have more practice than most at setting expectations with the professionals in charge of Liam’s care. We have to.
Liam’s life depends on it.
The meeting was tense. Tension brought on entirely by my anger at the situation and the fact that I am a big, loud oaf when I’m angry. There of course was no violence or inappropriate language, but I could tell by the look on her face and by the taps on my leg by my wife that I may have gotten louder and louder as I listed my grievances. I really didn’t want to start Liam’s school career being the angry dad but it was necessary. After Karin and I laid out our case for why changing Liam’s school schedule at the very last possible moment, and denying him the chance at the orientation process offered to the other incoming kindergartners was unreasonable, unfair and quite possibly illegal, the school social worker brought the principal over immediately and helped to facilitate a quick meeting. The principal, while understandably busy given that it was the first day of school met with us quickly. It was a shorter meeting than I had expected but that is to the principal’s credit. Understanding that we were angry even though she didn’t yet understand why, she accepted that a series of mistakes were made on their end and instead focused on what she could do to make it right.
Liam’s orientation was scheduled for 10:00 am the following day.
A few times a month Karin or myself (mostly Karin) will discuss treatment options with Liam’s neurologist over the phone. Explaining symptoms, relaying changes in medicine doses, what to watch for to see if they’re working, and what to do if they aren’t. Just as often, Karin or myself (mostly Karin) will speak to our pulmonogist over the phone to discuss breath volumes, peak inspiratory pressures, and overnight oxygen settings. Misunderstandings and mis-communications over the phone are luxuries that the Olson family cannot afford. We take notes, we ask questions, we make sure we understand what is expected of us and of Liam. It is a relationship that we have built by open and honest communication. A relationship that we need to have with Liam’s educators as well.
Friday morning Liam was able to meet with his teacher, the principal, two of his therapists, and the superintendent of schools for a tour. He was able to see the lift that the school department is still working to get operational, but also to check out the alternate route that he’ll have to use in the meantime. It isn’t ideal but they’re trying, I think they know now that I won’t let them forget about it. The orientation, from what I hear since I was at work, I wish I could have been there, was great. Liam was able to meet the first and second graders that will be in his class with him this year. The principal and his teacher explicitly discussed with Karin what the most effective means of communicating with each of them will be moving forward and they even thought of some things that will help Liam’s nurse do his job easier at the school.
They really are trying.
I don’t believe for a second that someone intentionally or maliciously decided to deny something from my child or his classmates. It is, after all, reasonable to change Liam’s first day since there are first and second graders in his classroom, and that way they can begin their daily routine a week earlier. But the time to make that decision was three months ago so that those same kids can have their orientation process and the expectation can be communicated in plenty of time. Three months ago when they could think through all of the issues it may or may not create for the portion of the student population that even the slightest change might effect in ways that people not living this life may not realize. Three months ago, NOT the day before. No one meant for this to be unfair but it was, and it’s my job to point that out to them. And I don’t feel bad for pointing that out to all of you as well while it was happening.
I had no problem writing about all the wonderful parts of Liam’s interactions with the school system in our town thus far. His first steps, his making friends, his wonderful penmanship, and even the first time he got in trouble.
It’s why I also had no problem writing about their mistakes when they let us down.
72 hours ago I had little hope for a positive and exciting first day of school celebration, but the actions of the school in the days following, showing us that they really are trying to supply everything they can for his education, as complicated as that is, have turned me back around.
We’re excited about Wednesday again, and while I don’t think I have anything to say I’m sorry for, I do have to say thank you.
Liam’s agency and dignity being among our top priorities as parents, it’s important to us that , whenever possible, Liam get to choose what is done to/for him. Unable to speak, or point, or grasp, Liam communicates his wants with eye gaze and head nods. He picks out his outfits every day (between choices given him by his stylist.) Sometimes he decides in an instant. Sometimes he needs a little while to think about it, and sometimes he just can’t be bothered with the demands of making his own decision. He’s five. I’m gonna just assume that all that is universal.
The thing is, when Liam is really alert and engaged in the decision-making process, his preferences are apparent. His attitudes obvious, even strangers would have no problem recognizing his meanings. So it was the first friday night in June during the Dream Night festivities at the Roger Williams Park Zoo. His wheelchair parked in the gift shop, in a corner to stay out of traffic, Karin and I would each approach with pairs of stuffed animals. A bracket style gladiator tournament to find the winning souvenir with Liam’s head turns and eye gaze applying the thumbs-up or down decision on just who would come home with us that night.
Elephant vs. Zebra., Monkey vs Buffalo, on and on it went until the winners were then put in again. Decision after decision until we were left with a winner.
And his name is Anton.
There are an awful lot of stuffed animals in our house, and they all have names. Karin is the namer of things, and she’s incredibly good at what she does. We have lions named Levon, Lemar, Levi and Lenny (and Frodo, and Ribbons, and Roar-y). Penguins named Gordon, Gordon Jr. and Freddy. A whale named Whale-n Smithers, and even a watering can shaped like a pig and whose name is Rusty. Everything has a name around here. We have a dragon named Douglas, and a stuffed Dinosaur from a hospital gift shop named Enterobacter-saurus after the bacteria in his blood stream from his burst appendix that kept Liam in that damned hospital.
But right from the start Anton seemed different. Liam seemed a bit more attached to the stuffed friend he had to tell his parents he wanted three times before we believed him. He was one of only two stuffed animals that made the trip down to Jersey with us last month. (The other one also in the picture below, LeMar the Lion, has been in Liam’s bed with him since he was ten days old. A gift from his Uncle Phil and Auntie Jannah)
And before long it would become apparent to us that Liam had decided that Anton was his favorite friend to sleep with. Months now, it’s been Anton, through adventures with flooded diapers and trips in the washing machine and dryer. It’s Anton. So much so in fact that eventually I just had to post a picture to Instagram about it.
And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…
See it? That alone, I thought was a pretty cool thing. Cool because it’s been fun to interact with the zoo on twitter and instagram every time we go there, but also cool because they’re right. Anton is a good name for an anteater.
As cool as I thought all that was though, this morning things got a whole lot cooler. This morning I got an email from the good folks at the Roger Williams Park Zoo. An email with the subject line Anton the Anteater.
Here, I’ll let them tell you, Here’s the text of the email I got.
Hi Eric –
Firstly, I would like to let you know that here at the Zoo we read your blog and it makes us so proud to be able to offer Dream Night, as well as being a space that you and your family love to come to. I noticed on Instagram that you had recently visited the Zoo, and your son Liam had picked out an anteater toy, named Anton. Well, it is a happy coincidence that we recently had an anteater birth, a little boy!
So, in recognition of the support you’ve given to the Zoo over the years, we would like to name our newest addition Anton as well, and invite your family (original Anton included!) to come visit the Zoo as our guests for the day.
Let us know when you’d like to schedule your visit, and thank you for your continued support!
There are so many reasons why this is probably the coolest thing that has happened since I’ve started this blog. I’ll only get to a few …
First: I was already almost dancing around our house this morning when I read this since it was just plain awesome to hear that an animal at the local zoo was being named indirectly by us, and by extension Liam. The Roger Williams Park Zoo has always been such an important place for us as a family (as new readers can read about here, here and also here) but then Karin started sending me more information that she was reading about our new friend Anton from the Zoo website and I got even more excited since it seems Anton himself is kind of a big deal. (from the linked article)
Zoo Executive Director Dr. Jeremy Goodman commented that the birth of a male giant anteater is a significant occurrence in captive populations, because there are very few males in the Association of Zoos and Aquariums (AZA) Species Survival Program.
Corndog (Anton’s Mom) was selected to come to Roger Williams Park Zoo to be bred with Johei based on recommendations made by the AZA. Giant anteaters, native to grassland and lowland tropical forests in Central and South America, are listed as “vulnerable” by the IUCN due to loss of habitat and hunting. It is estimated that only 5,000 animals remain in the wild.
Besides, How can you not fall in love with something like this…
Second: As goofy and silly as Karin and I can get with the naming thing. Names mean things. As Anton the anteater makes his way in this world and is transferred to another zoo somewhere in the hopes that he will help the population of his species, he will continue to be called Anton. Liam will always have that indirect connection to him. I realize that this may seem like I’m greatly overstating things but like any parent, I often think about the impact that my son will have on this world. The waves of influence that Liam and his unique position and perspective will create. The fact that my wife’s love of alliteration and of naming things (ESPECIALLY for her son) have become one of those waves, and that it will continue to go on rippling, fills me with happiness and pride.
Names have power. In the Patrick Rothfuss novel The Name of the Wind (which I highly recommend) he writes…
Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts. There are seven words that will make a woman love you. There are ten words that will break a strong man’s will. But a word is nothing but a painting of a fire. A name is the fire itself.
Yeah, in the novel he’s referring to a type of magic. I still think it fits and the line quickly jumped into my head this morning as I thought about all of this, because no matter the meaning of the name Anton, the story behind him coming to it will always mean something to me. To my family.
To my boy.
Third: I’m already living vicariously through him. I assume the AZA will probably end up transferring him somewhere when he’s old enough to breed. Maybe we can visit him. San Diego? The Bronx? Maybe someday we’ll decide to plan a whole vacation to wherever little Anton ends up having kids of his own. We’re zoo people. Why not take a vacation to see other zoos?
And finally, just because it’s one more story that we get to tell about how lucky we are to be the parents of this wonderful boy of ours. Things like this would obviously never happen without him. His influence and the energy that he puts into the world has continued to come back to us in surprising and exciting ways. This is a story that I will forever enjoy telling.
The time my son and my wife got to name the new giant anteater at our local zoo. How cools is that?
And it’s all in a name
A name like Anton.
I’ve never “Reblogged” someone else’s post before, but how could I not want to help my Dad who is himself helping Liam.
My father is an impressive man. A Potter, a painter, a bonsai tree maker. Next month, thanks to the good folks at Donnelly, Conroy & Gelhaar LLP, my father, Paul Olson is having a retrospective solo exhibition in Boston, with an Artist’s Reception June 3rd.
If your anywhere near Boston please feel free to attend, and whether you’re local or not please feel free to tweet, blog, or (based on my recent referral stats, most importantly) Facebook this post to spread the word.
The proceeds of any paintings sold will benefit The Liam the Lion Fund. The fund Karin and I created to assist with the larger medical and equipment needs of Liam’s care.
Originally posted on Olson Paintings:
Thanks to the good folks at Donnelly, Conroy & Gelhaar LLP, Paul Olson is having a retrospective exhibition in Boston, with an Artist’s Reception on:
Tuesday, June 3rd, 2014, 5:30 p.m. – 7:30 p.m.
Donnelly, Conroy & Gelhaar, LLP
260 Franklin Street, 16th Floor
Boston, MA 02110
Please RSVP by May 28th to Chelsea Lord – email@example.com or 617-720-2880
Directions and parking suggestions can be found at www.dcglaw.com
This show includes landscapes of Rhode Island, steel construction of Providence Place Mall, tree drawings done at the Arnold Arboretum and a series of portraits done in his painting class at Massart.
All proceeds from sales will go to the “Liam the Lion Fund” to support Paul’s grandson. Learn about Liam at http://www.pressuresupport.com.
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.
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.
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.
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 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.
Today is Liam’s 5th birthday.
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.
How the hell did that happen?
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.
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.
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 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.
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.