Tag Archives: Ventilator

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.

 

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.

 

Crib Notes

I get to go to bed earlier than 4:15am now! No longer tossing and turning on the couch grumbling about the pain in my neck it creates while counting the ventilator breaths I can hear on the baby monitor. Karin can lie back down in bed from 4am to 8am instead of sitting up by Liam’s crib while he has his daily awake time from 5am to 6:30am.

It’s a comfortable bed. A nice wide full size bed. Probably the nicest bed that I’ve ever even purchased. The only thing that would make it nicer would be if it were mine.

This one is a big boy’s bed.

*****

Last week on a day that also included Liam’s first ever trip to see a movie in the theater, (Despicable Me 2, and yes the whole family enjoyed the movie and the experience) I worked past the emotions of how on earth Liam could possibly be too old for a crib and got to work turning this

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into this.

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I’m betting that the parenting books tell you it’s a bad idea to sleep in the same bed as your 4 year old but we don’t go in for parenting manuals around here. Instead we just do what works for us. What works for him.

The phrase 24 hour a day care is not hyperbole and for the past 4 years Karin and I have split the night in two. Couch time and bed time. Neither of us in either space together and unfortunately that isn’t likely to change anytime soon. But our level of rest will. The light from the ipad or kindle is hardly brighter than the displays on his feeding pump, vent or oximeter. I can read and I can sleep and I can get a little more rest all the while being less than an arm’s length away from the boy. From the circuit. From the suction rig.

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A big boy bed. Just as exciting as the day that Liam left the confines of his NICU isolette and into an open air crib but I’m not sure which of us has been more excited about it. Liam, who now has the room he needs to stretch out as much as he wants, (and even has the audacity to learn how to roll over by himself, the little scamp.) or me and Karin who will get bits of sleep that we so desperately need while still being close enough to care for the big boy stretching next us.

Pretty sure it’s us, but even if it’s not today, it will be once Liam gets to hear me snore.

Dental Plan

Rare Disease Day was this week and I did nothing here to commemorate it. I’m terrible with those things and don’t even know they are happening until the morning of, when inevitably someone will mention it in my twitter feed. The week before last was National Tubefeed Awareness week or “Tubey” Week but even though Liam has been tube fed his entire life, you wouldn’t have heard that from me because, like I already said, I’m terrible with those things.

Anyway, I’m falling back into that trap where blog posts need to encompass some grand idea or story and so I’m trying to head it off at the pass. Parenting Liam while exciting at times isn’t all big revelations and medical emergencies. Most of the time it’s just getting through the day to day like anybody else.

Like going to the dentist.

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Liam handled it better than I did but in the end the dentist’s final words were “whatever you’re doing, just keep right on doing that because everything in there looks exactly as it should.” so, we’ll take it.

Due to Liam’s annual month-long hospital stays and other illnesses, then throw in a half year on blood thinners, and this was Liam’s first ever dental appointment. Thanks to prematurity, not eating food by mouth and breathing not by mouth but by ventilator (causes the gums to become more fibrous making it more difficult for teeth to break through) the delay was not a problem because Liam, in essence, still has the mouth of a two year old. Which is why at this very moment of 2:12AM instead of sleeping peacefully, he is fitfully tossing and turning in the pain of yet even more teething.

There isn’t enough Children’s Motrin in the state, the teething just doesn’t stop around here. Ever.

Might be time to switch to a bit of Whisky on the gums. . .

and time to try something new for Liam’s teething pain also.

G’night.

Look Ma! No Volume Support.

As complex as Liam’s medical needs are, even the biggest of accomplishments can be wiped clean by the backslide of an illness or a long hospital stay. Now, we could focus on how depressing it is that while last year at this time Liam was walking in his walker a couple of times a week but after last summer’s 40 day hospital stay he has only done it once in the past 6 months. We could focus on the fact that he’s NOT doing something as often or as well as he once was but that just doesn’t sound like us now does it?

Instead, and in true Olson fashion, we simply relish the fact that we get to celebrate certain accomplishments again and again! What could be better? Last year alone we got to celebrate Liam’s “first” day of school three times.

How many families get to say that?

Well, we do. We get to say that and tonight we got to celebrate something again. For the first time since July Liam spent 30 minutes breathing on his own without the aid of his ventilator.

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No doctor’s orders or therapist’s suggestions. Just Liam’s Mom deciding that it was time for him to do a little more work today. Just a wonderful picture to surprise me at work. Just the knowledge of a parent that it was time. That he was strong enough again. That whatever vent setting adjustments and illnesses may have delayed the progress of getting Liam off his vent that his Mom knew that he was ready and who in the world is better suited than a boy’s mother to make that call?

Bringing Home Technology — Liam’s Film Debut

If you follow my twitter feed (@pressuresupport) then you know that we had a weird day yesterday. Weird in a good way, but weird nonetheless. It’s not everyday you get to see yourself on a big screen, in a short film, shown in front of an audience. Weird.

You may remember that back in March a film crew came to the house to interview and film us for a short film about families that have children at home on medical technology. Vent families. The film will be used in different training uses for staff of the hospital and with families facing the prospect of going home with medical equipment. Yesterday was our first chance to see the movie.  Along with the two other movies showcasing two other families it was screened for the Pediatric Nursing Grand Rounds. By my count there were about 40 people in attendance from two hospitals,  along with representatives from at least one nursing company and the biggest local medical equipment company.

The three short films (Which will ultimately be edited together into one bigger film) were interspersed with presentations from hospital staff on this month’s topic which was the importance of standardizing the training and educating of parents and caregivers for children going home with medical equipment. The films being just a small part in a very large and worthwhile project that involves countless staff across many different institutions. Having gone through this training ourselves before this effort to standardize the training Karin and I know first hand how important this project is. We feel humbled and honored in being asked to be a part of it. I’d like to thank Jerilyn Devin, the coordinator for the Ventilator Integration Program for thinking of us when looking for participating families.

After the meeting Karin and I were approached by a few hospital administrators and department managers letting us know that they would also be showing the films at their staff meetings. Reminding their own staff of the day-to-day home life that families like ours encounter. That’s pretty cool too. The movies were definitely well received. I even got a few laughs.

All of the videography and production of the movie was done by Sean Devin and Jose Cota Jr. This is their film, and I thank them for being gracious enough to get me a copy of the file and the permission to post it here. They did an amazing job. They took hours and hours of footage and managed to whittle them down to seven and a half minutes that I feel accurately represent the day-to-day life of our home with Liam’s medical technology. The little details that they chose to include made me so happy to see, including the footage of Karin wiping Liam’s face. Anyone who has met us in person can tell you that to spend time with Liam is to spend time wiping his face. Drooly kid, that boy.

I would have loved it if the footage of us outside our house was shot during a beautiful summer day with the lush blooms of all of my yard work but that isn’t something that anybody had any control over. The amount of work and planning and forethought that went into making these movies humbles me greatly about my meager late night typing here. It also would have been cool to not tie Liam into a knot with his circuit while nervously changing his trach in front of a lighting set-up and two cameras but overall I think we did a pretty good job fooling people into thinking that we know what we are talking about.

Besides, I think we can all agree, the show was essentially stolen by our cat Calvin anyway.

*****Because I am ridiculously proud of the discipline, and hard work she has done to accomplish this, and also because I am fairly certain (since she told me) that she wants anyone who hasn’t seen her lately to know, I’m just going to mention here that Karin has lost 35 pounds since this filming. You’re amazing H.B.

Hospital Stays and Monitors

A few months after Liam was discharged home from the NICU the hospital he was born (and spent his first 153 days) in opened a beautiful, brand new, state-of-the-art, 80 bed, private room  NICU facility that has played host to numerous national neonatology conferences in the almost three years since opening. It’s pretty awesome and in all the time that it has been open and treating patients I haven’t ever been up there.  I suppose by itself that isn’t all that remarkable until I remind you all that I work there. I have worked in that hospital since long before Liam was even a twinkle in my eye.  Worse yet, as a department manager I do have job responsibilities that require me to go into the NICU.  Responsibilities that I have spent three years avoiding by asking co-workers and other staff members to help me out and take my place.

It’s not that I’ve NEVER been in the unit.  It’s just that the one time that I did walk through, about a week before it was ready to take on patients and they were in full training mode, I quickly realized that I couldn’t do it.  I couldn’t handle it.

I literally couldn’t stomach it.

While training staff and writing and implementing the policies and procedures of the brand new hospital unit each room was occupied by expensive mannequin babies hooked up to the normal patient monitors and set to alarm randomly with random symptoms to play out any and all possible scenarios. And so although there weren’t any actual patients or their families the unit was “functioning” as if we were in the midst of a baby boom. The lights, the smells, and the damn sounds of a NICU were everywhere. It was the damn monitors, the sounds, that got me.

There I was, only a few steps from the elevator and about to walk down the hall toward the conference room when I heard it. The private rooms of this beautiful new NICU kept the hall fairly quiet as opposed to the bay style setup we were used to when Liam was a patient they are not silent by any means, so when I passed that third doorway and heard the alarm of a de-sat ringing out of a monitor above a creepy plastic doll in an isolette I thought I was going to throw up right there in the hall.

It wasn’t the sight of other NICU babies or families that made me nauseous since there weren’t any to be seen. It was the sound.  It was that awful, awful beep and ring of oxygen saturation numbers dropping. Remember, all this happened only a few months after Liam had left the NICU and although he was at that time in the PICU of the children’s hospital down the road their monitors were different.  Different tones, different rhythms. I had worked hard to suppress the memories of those sounds as a coping mechanism and with a few simple sounds 153 days of heartache, stress and worry came flooding back in an instant. An awful instant that I was completely unprepared for.

It was that moment actually that made me realize that maybe I wasn’t as “ok” with our situation as I thought I was.  It was hearing that sound and the feeling of being kicked in the gut that came with it that made me realize that working and returning every day to the hospital where Liam had been a patient  was hindering my ability to process what was happening. If nothing else that damn alarm told me I needed some time away from this place to get some closure and space from constantly seeing the people and places that for so long were so dangerously important to Liam’s survival.

I still haven’t gotten that closure or that space and perspective on what we went through there as evidenced by the fact that I haven’t set foot in the unit since but that’s for another blog.  Because today I can’t stop thinking about those damn monitors.  Any monitors.

As I said above the monitors in the PICU are different.  A different tone, a different rhythm, and different symbols on the screen, they may not make me as nauseous as the NICU version but they still bring on an anxiousness and anger in me.

PICU Monitor

On Tuesday Liam was admitted to the hospital for his bi-annual bronchoscopy and ventilator assessment. He spent Tuesday night in the PICU to get a blood gas at night to decide whether to adjust any of his vent settings. We entered the hospital with a very healthy and content little boy. THis was a planned and scheduled hospital stay that we had months to prepare for, as well as being, by my own quick calculations Liam’s 195th (give or take) night staying in the PICU.

Why then did I spend every minute of the visit staring at this damn monitor and worrying about any subtle little change or blip that happened there on that screen?

Worrying that something was going to keep us there longer than the 24 hours we were told to expect.  We know better than to believe what we are told. Our last “24 hour” vent assessment lasted 4 days I’d be damned if I was going to let that happen again.

Except that the only thing I could do at the time, the only thing I can ever really “do” when Liam is in the hospital is to watch that monitor and worry.  Worry and wait. Wait for the resident to come in and start asking questions.  We would be in and out in under 30 hours come hell or high water and I was ready to barricade the door barring entry from any doctor without direct and personal knowledge of Liam’s condition and past medical history.

I wasn’t going to allow in any “heroes”

You know the type – They’re the really gung-ho interns and residents in a teaching hospital. They usually come out late at night after the attending has gone home and they are left to mind the store unless a major trauma comes in. They know better than the parents do because hey they’ve passed their boards — they don’t need to ask questions of, or more importantly listen to, parents because as rare as it may be they read up a bit on “Miller Dieker Syndrome” before they came in to the room. – and then worst kind – they love finding symptoms for things THAT WE WEREN’T EVEN LOOKING FOR! The kind of resident that just can’t wait to impress the attending with that “look what I found!” look in their eye, just hoping and wishing that something as simple as the bad placement of a lead or oximeter probe is really an undiagnosed heart condition or worse and we better schedule some films in the morning. The kind who see patients not as children to be treated but as diagnosis, syndromes, and treatments to be checked off some sort of lifelist like a birdwatcher.  Don’t get me wrong this is not a majority of interns and residents, I would have to say that MOST residents and interns have the potential to be very good doctors,  but believe me the “heroes” exist, and they can be dangerous (someday I’ll tell you about the resident who couldn’t help but tell Karin and I how excited he was to be involved in a pulmonary hypertension case as we stood next to our three-day old baby not sure at the time if he would even make it another three). On an overnight observation any unnecessary test can lead to further time in the PICU waiting for results. Further time in the PICU can lead to further complications like MRSA and any other drug-resistant bug floating around an intensive care unit. So for this night? No. No for this night they weren’t allowed to see Liam.

Unless his Mom said it was ok. I had to work all week so once Karin got sick of watching me stare at Liam’s monitor I got sent home to a big, empty, quiet house to try to get some rest. I’m man enough to admit that I do not do well in this house when all by myself.  It is so rare that I would be here alone and overnight alone is unsettling. I felt guilty for being here able to sit on my own couch watching TV on the monitor in my living room while Karin sat vigilantly by Liam’s bedside watching his monitor.

By the time I got to the hospital on Wednesday morning the doctors had rounded. They saw what they needed to see and we got cleared to go home as soon as the paperwork was finished.  We all know that the paperwork can take hours (which it did) and you’re not really “cleared to go home” until you are in the car with the hospital growing smaller in the rearview. We have been cleared and then told we had to stay before and in fact that very thing happened to close friends of ours and their son just a few months ago so instead of relaxing and getting ready to take my family home I parked myself next to that bed and stared at his monitor for a few more hours until the paperwork was completed and we busted out of the joint before anyone could change their minds.

As I finish typing this Liam is sleeping soundly for the first night since his hospital stay four days ago. As accustomed to hospital visits as we are we’ve had a rough time getting back into our routines this time and Liam has yet to get back to his sleep schedule. As a result none of us have slept much at all this week and I’m amazed I was even able to type this post at all.  I’m going to go make sure Liam is really really sleeping before trying to catch a few zzzz’s myself.

How do I check how deeply he’s sleeping?? That’s easy I just look at his heart rate.

It’s on his home monitor. (I hate that one too)

 

Picture Pages

I haven’t been feeling very “wordy” lately. Used it all up during the interview on Saturday I guess. The film shoot went well even though it was at times overwhelming and ultimately surreal. They were here for a bit over four hours, hopefully they’ll find a minute or two of footage that makes it look like I know what I’m talking about.

Anyway, like I said, me and the words haven’t been getting along and so here’s a few awesome pictures of Liam from the past week or so.

More bike time at school last week.  As for the pink crocs, they are formerly the shoes of the daughter of Liam’s physical therapist who screwed them onto the pedals of the bike so that Liam can put his foot inside them while still wearing his own shoes. Clever, clever physical therapist.

Milestone alert! Last Thursday Liam (and his daytime nurse, who took the photo) left Mom out in the hall and had his first afternoon of classroom time without a parent in the room with him.  It was difficult for Karin to have him go into a room that she couldn’t enter with him. I suppose the only other time that’s ever happened before is every time he’s been wheeled into the operating room. Mom and Son survived the brutal ordeal of separation just fine though. (Liam a little more so than his Mom)

I’m having a ton of fun playing with the camera in my phone and the apps that let me experiment with different filters for film effects and frames. It’s fun.

And finally, won’t be long now and Liam will be moving out of his crib and into a big boy bed. Getting a little crowded in there. (picture by Karin this morning)

With that I take leave of you all. We have a night nurse tonight. For the first time in twelve days I might actually get a full night of sleep!

Talk to you later.