Trach

The Year (so far) in Pictures

Full disclosure, If you follow me on Instagram (pressuresupport) or Twitter (@pressuresupport) you’ve probably already seen most of this, But this way, you can see it again all in one place.

Yay?

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I guess I just picked the wrong year to fall off of my blogging game, because Liam’s 6th year has been a pretty good one.

As you may recall the northeast got buried under record amounts of snow this year. Here in Rhode Island we got clobbered. I usually don’t mind the snow but in 2015 I anticipated the spring in ways I have never looked forward to a season in the past. Liam agreed.

So the year started out a little rough, but as we always we do, we trudged through it, and made it to the good parts. Let’s be honest, no year is going to be perfect, and we’ll never be able to look back on a time period as long as six months of Liam’s life without a bit of medical drama. All things considered, the first 6 months of 2015 were pretty good in that regard, with only a few blips along the way.

Blip the first was when Liam’s physical therapist thought there may be something a little hinky going on with Liam’s shoulder and recommended we see the orthopedist. Which we did, making sure we got in there as soon as we could.  The orthopedist, realizing he hadn’t done a full workup of films on Liam in a long while ordered the works instead of just his arms and shoulders. It seemed like a good idea, so we agreed to get a bunch of extra x-rays while we were there.

You see? I never stopped thinking like a blogger. Who but a special needs parenting blogger takes a picture of his son getting the x’ray work up?

The films came back quickly and we got the news that afternoon over the phone.  Liam’s shoulders are both completely fine.

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His hips however are both dislocated.

Naturally. They grew that way, and although the shock of hearing it had me very worried for a little while, this is far from uncommon for children with muscle tone issues like his syndrome presents. Liam is showing no signs of any pain or discomfort, which is why the diagnosis came as such a shock. In fact unless he shows us otherwise, because there’s no sign of pain or circulation issues, because he can still use his stander and his walker, and because his spine is straight as an arrow, there’s really nothing to be done about it anyway. Liam will just live with a couple of naturally dislocated hips. Add it to the list.

He’s still a rock star.

Dislocated hips? Don’t care, I’m still walking.

Medical blip the second, a short hospital stay for a bout with pneumonia. Just one of those things that happens, and a chance for Liam to visit with and show off for all the doctors, nurses, and therapists at the Hasbro Children’s Hospital PICU that he hadn’t seen in so long.

Yes other than that Liam stayed away from the hopsital for the most part this year. And it showed, because being 6 years old has been a year for Liam to be where he belongs. Out and about and in the community.

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This year, beginning in January, once the school was finally set up to handle Liam’s needs with the wheelchair lift finally installed, and his teacher and the classroom aides really getting to know how to effectively communicate with Liam, he really started excelling in kindergarten.  With reports of improvement in all sorts of areas, including the making of paper ducks.

But like any kindergartner, Liam enjoyed the special days more than any. Like when a turtle came to visit the class.

And “Take a Special Friend to School” Day, where someone very special got to spend the afternoon with Liam and his whole class for an afternoon. Recess was my favorite part!

Or on field day where Liam and his nurse/ninja/best buddy Walter competed in the three-legged (and two wheel) race.

Outside of school things were just as good this year. If you’ve followed me for very long at all you know just how much the Roger Williams Park Zoo in Providence RI means to us and to Liam. This year has seen no change to that. In fact this spring when strolling the place we were stopped more than once by Zoo staff who knew and recognized him as Liam! the boy who named Anton.

When Liam goes to his hometown zoo. He gets treated like a rock star.

But not only by the people there.

Liam has fans of all kinds at Roger Williams Zoo.

 

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Dream Night this year was fantastic as it always is. I didn’t take as many photos though, I was having too much fun just taking it all in.

And so was Liam.

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But it wasn’t only when out in the community that Liam had a great year. He had some good times at home too.

 

Like on his swing in his own backyard.

Or showing off for his mom and I when using his head switch to utilize the communication apps on his ipad to answer yes and no questions.

And as much as Liam likes working with his ipad, he’s an old soul and still loves the feel of a good old fashioned book. So a gift of books directly from the artist and writer himself (who went to school at RISD with Liam’s Grampa, my dad) was an especially exciting treat.  Thanks Aaron!!

 

Not as big a treat as hanging out with Dad in the driveway while brewing a new batch of beer using Olson & Son Hopyard hops though.

Liam is an exceptional assistant brewer.

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But the thing with being around Liam is that there is an aura of joy that follows him, not only during special events or during treats. There is a joy just being around him just resting on the couch or going for a walk around the block.

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There was a time when fathers would keep pictures of their kids in their wallets to share with co-workers friends and anyone who would listen. Today we have Twitter and Instagram, facebook and our blogs for that, and here’s mine. While on my blogging hiatus I heard from so many of you who wanted to hear about how Liam was doing and missed seeing his pictures. I’m sorry about that. Along with more essay posts about parenting a child with complex medical needs, I forget how many people just like seeing Liam’s smile.

I won’t forget that again.

Here, have one more smile at the end.

Like I said, the first 6 months of 2015 have been pretty good so far. Let’s hope it keeps up, and if it doesn’t, as long as I get to see that smile every now and again, we’ll get through whatever this year can throw at us.

 

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.

 

Learner’s Permit

Liam has never crawled across the room to check out something shiny that caught his eye.

He’s never darted away down the grocery aisle for whatever the reason is that children dart away down the grocery aisle. To Play, or investigate, to explore.

In that crawl or the sudden sprint by a child lies a level of communication that we have never gotten to see from Liam. To see where he wants to go. To learn what catches his eye. To discover where his interests lie.

Last year the timeline was three to four years. Over the summer, after improvements in making choices and showing an awareness of his surroundings that timeline was adjusted.

“He’s ready. At least ready to try it. Let’s see where he takes it.” I was shocked when his PT said it after a particularly good session with his speech therapist and her assortment of switches. “Let’s get him one to practice with in the fall and see.” All of the sudden three years turned into three months and the possibility of a whole new world. A new freedom. A new way to explore. A new way to show us what he wants.

Look out world. Last week Liam got his Learner’s Permit and a smoking hot set of wheels. Just a loaner from the wheelchair company for now, and he only uses at school while we get seat and support measurements to learn what will work best for Liam when the time comes to get him his own model. I’m thinking flames on the side right?

Liam also went to his first professional hockey game last week when we took him to see the Providence Bruins game. Liam absolutely loved it, and someday when he’s using those switches to drive the Zamboni at the Providence Bruins games we’ll look back at this footage as the start of it all.

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Easing back into it.

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Sure, I could make excuses. I could tell you how tired we are. I could tell you how the day job has been busier than normal for the past few months. I could tell you how there really hasn’t been that much to blog about as we have been settled so deeply into our routine. But that wouldn’t exactly be accurate. It wouldn’t be the truth since, to be honest, so very much has happened. Let’s see,

  • School started and Liam has taken very well to being a full-time part of the classroom. He has a special relationship with his classmates and his full-time teacher is nothing short of wonderful.
  • Liam has started to reliably make choices using eye gaze including such things as picking out his clothes every morning.
  • Karin and I got to attend our first Open House at school, our own rite of passage we never thought we’d see. We had our latest and greatest IEP and everything that entails.
  • We started the ongoing process of breaking in a new night nurse in the hopes that someday when she works we’ll actually get to sleep for a full 8 hours.
  • I made two different beers using only the hops that I grew in my backyard that I told you all so much about.
  • And maybe most importantly, The Boston Red Sox won the World Series.

And that’s just the big stuff. That doesn’t even count all the little moments. All the little happenings that were probably worthy of their own blog posts. Making his pediatrician cry showing him a video of Liam in his walker. Being able to ask my parents to babysit for the first time in Liam’s life. Starting to plan for Liam’s FIFTH (!!!!!!!!!) birthday party (January 11th 2014. More details to come. Mark your calendars.  You are all welcome.)

Anyway, I obviously cannot be trusted to assure you that I will post more reliably now but at the very least this post will serve to break the seal. With the pressure of the first post back out-of-the-way I can get back to little updates more frequently.

Thank you all for hanging in there or coming back. I appreciate it. While not blogging I was also not reading or commenting on other blogs. I’ll work on that too.

In the meantime, things here are going well. I hope that all of you can say the same for where you are.

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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.

Fighting Nemo: The Blizzard of 2013 part IV — The Things we Carried.

Wheelchair
1 Adorable 4-year-old boy
1 LTV-900 ventilator
1 Lithium rechargeable battery
1 Portable liquid oxygen tank
1 Pulse Oximeter
1 Portable Suction Rig
Go Bag   —  spare trachs, spare ventilator circuit, ambu bag, nasal versed, gloves, surgi-lube, syringes, sterile water.

Liam’s Backpack
10 5ml syringes, 20 10ml syringes, 10 20ml syringes
All of Liam’s meds (not going to list them all but not knowing when we would make it home again we had to grab EVERYTHING)
Spare G-tube Mic-key button and extension.
2×2 fenestrated sponges.
4×4 fenestrated sponges.
Spare pulse oximeter probe
5 Feeding Pump bags
6 cans of formula
5 Facecloths for catching drool

My Backpack
Charging chord for suction rig
A/C plug for LTV ventilator
A/C charging cord for ventilator Lithium Battery
A/C charging cord for feeding pump
A/C charging cord for pulse oximeter
Additional Spare circuit for the ventilator
2 more cans of formula
1 cell phone charger
My kindle eReader
Karin’s kindle eReader

Miscellaneous Bag (one of those nylon reusable grocery store bags)
1 cell phone charger
4 changes of clothes for Liam
1 feeding pump
2 child sized blankets
5 onesies
2 sets of pajamas

In the Back of the Van
1 case of 24 cans of formula
1 case of 128 diapers
1 case of 100 suction catheters

From house to van. Van to hospital, Hospital to a different hospital. Ultimately to home. Aside from the clothes on our backs, this is everything we carried. In other words, we thought enough about how long we’d be away from home to pack up our kindles but apparently Karin and I never once thought about changing our own clothes, brushing our own teeth, dealing with our own needs. It was never very cozy at all, but at least Liam was warm.

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Listen folks, I know that this blizzard is old news and as I type this a warm driving rain is trying its hardest to erase any evidence from my yard. With the whole thing happening almost two weeks ago, telling this story my way has become more about me (setting/reaching a goal, finishing what I start) than it has to do with you (reading what may ultimately be a boring conclusion to a mediocre story) I’m pretty sure I’ll finish it up in just one more part. Thanks for hanging in there.

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?

Our holiday in pictures.

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And the hustle and bustle of the holidays end and we fall into old routines or embrace new beginnings. I haven’t made any resolutions for the coming year but I have set some goals. I’ll keep the details to myself but suffice it to say that if I follow through on some of them the results will be seen here.

And so as I so often do when I return from a long hiatus I will ease the pressure to write anything worth reading I will dazzle you with photos of my boy and our adventures.

And adventures we did have.

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On Christmas Eve we packed up the van and headed down the storied Connecticut Turnpike for a holiday celebration that’s been a long time in coming. Karin was able to spend Christmas with her own parents for the first time in 5 years. Liam was able to see his Grammy and Opa on Christmas for the first time in his life. The Olson’s were heading to Jersey!

The ride was uneventful. Just as we had hoped it would be, and as we crested a hill and passed the sign marking our entrance to Wanaque New Jersey, our destination, the first flakes of our white Christmas hit our windshield. Like magic.

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Christmas day was filled with visits and meetings with relatives not seen in years. Stuffed with good food, good drink, and great conversation my in-laws brand new house felt like home even though it was our first ever visit there.

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Liam was incredible. Well behaved and happy he stayed awake and engaged for almost all of the festivities. We asked so much of him between the long car rides and the overstimulation of a new environment and meeting so many new people I was amazed at how well he responded.

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He even got to sleep in a big boy bed. I’m talking really big boy, like king sized. A kid could get lost in a bed like that.

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The return trip would be the afternoon of the 26th, Liam’s fourth birthday. He had breakfast with his Grammy and Opa in the morning and had dinner and birthday cake with his Meme and Grampa, he’s a pretty lucky 4-year-old. Over those 48 hours he also saw his 4 Great Grandparents as well!

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Before Karin and I even knew what was happening an impromptu birthday party broke out as aunts and uncles and cousins from all over began stopping by to wish Liam a happy birthday. Since we had been away for a few days and had returned home from NJ less than an hour before all we could offer our gracious guests was tap water and a small cake my mother baked for Liam but no one seemed to care. We hooted and hollered and filled the house with laughter for a while.

We don’t have candles in our house, we have oxygen tanks instead. But on Liam’s birthday we throw caution to the wind and light a few because every child should have candles on their birthday cake. We turn the supplemental oxygen off and even pop off Liam’s circuit and point the tube at his cake so that Liam’s vent “blows” out his candles. We’re a little weird that way.

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So that was our Christmas Eve, Christmas, and Liam’s birthday in three crazy days and over three hundred miles of travelling. It was wonderful. If I had the energy I’d try to wrap it all into some neat little narrative package. But I don’t so I’ll let the pictures try to do that.

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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.

When Care is Always Intensive

“Well we’re talking about maybe getting you guys upstairs tomorrow.” Liam’s pediatrician seemed so excited to tell us.

“WHAT?!” I said. “WHY WOULD WE GO UPSTAIRS? WHO SAID WE NEED TO GO UPSTAIRS? IS THE PICU FULL?” I could feel my chest puffing up as I got louder. I took a deep breath. “Do we really have to go upstairs?”

We could tell by the look on Dr. F’s face that he was not expecting this reaction at all. I’m sure that for 99 out of 100 families moving upstairs and out of the Intensive Care Unit is a positive step in which to celebrate but that’s just not the case with us.

No, for we are the 1%.

We walk by the white board every day. Two pods. Eight rooms a pod. More than four blank spaces on the board means we can take a deep breath. There usually aren’t that many admissions in a day. One or two blank spots and the worry starts. One or two ER traumas and out the door and into the elevator Liam goes. By the time Dr. F came around that morning he gave voice to a fear that had been brewing for over a week.

Dr. F, taken aback by our objections, stated his case. He’s off of the pressors and with the septic shock resolved and the fact that the antibiotics have run their course we are just in a wait and see stage for when his G.I. tract will heal and start digesting food again. The severity of the shock basically shut down the function of his gut completely and there’s really no telling how long it will take for things to normalize. With the acute illness resolved Liam was closer to his baseline than not. Day to-day stuff is intermediate care not intensive and Liam was doing well enough to be managed by our pediatrician’s staff not intensivists. Valid points every one but it was missing the forest for the trees. The decision to go upstairs for Liam shouldn’t be made by the top-level of medical team effectiveness but the minute to minute practicality of caring for Liam’s complexity of care.

“Liam can’t go upstairs!” 10 days of stress and worry bubbling to the surface along with the fear that I wouldn’t be able to change anyone’s mind to stop it. “If he has to be in the hospital then he has to be in the unit. He’s just not safe up there.”

His hands in the air in a show of surrender Dr. F stopped me as my voice started to rise “well that’s a conversation you are going to have with the medical team here, I can’t totally make that decision but that’s what I gathered in talking to the attending. So you’ll have to explain this to them.”

” I absolutely will.” I noticed that my hands were balled tightly into fists by my side.

The situation diffused, at least for a moment, Dr. F wanted to know more “Now, unsafe? . . . what’s going on?”

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Back when swine flu and H1N1 were all the rage Liam had an unrelated bout with pneumonia that brought our little 10 month old back to the PICU only a month after our big long first stay there when Liam was trached and his bowel operated on. After 109 days we had become experts at Unit living but had never seen what was lovingly called “the floors”. That mythical place that starts two stories above our comfort zone. With an outbreak of this new flu the unit was packed pretty tight and even we recognized the need to get away from these germs. Since all signs were pointing to Liam being discharged in only a few more days we agreed that we should check out and move on up to the 4th floor.

The nurse was nervous right off the bat. The ventilator chugging along taunted her from Liam’s bedside. As I taped his spare trach along with a smaller one by the bedside for the possibility of an emergency trach change I let her know where I was putting them. “I’ve got the spare trachs here, here’s his 3.5mm and another one a size smaller in case there’s some swelling. I’m putting them right here by the ventilator.”

“Oh I don’t know how to change something like that.” she said it with a giggle, as if I was a little bit crazy for thinking that she would know how to change a trach.

“Well, what would you do if his mother and I aren’t in the room and his trach comes out?” I asked her, almost fearing the answer. Trachs pop out. More for some kids than others but it is an inevitability that must be prepared for. How can the nurse assigned by the hospital to care for Liam for the next 12 hours NOT know what to do if his trach comes out?

“Oh, Don’t worry, I would just call a code blue.”

To which I immediately turned to Karin and exclaimed “One of us will be in this room every single second until he goes home!”

A code blue.

Let me address that for a second. I’ve seen a code blue before. Yes, a code blue has been called on Liam before. It is exactly what it looks like on TV. So rather than calmly re-inserting the trach and tightening the velcro ties on the back of his neck something I have actually seen him sleep through(!!) he will be laid flat, surrounded by at least 8 people, increased oxygen flow, his clothes torn off and who knows what other overreactions, not to mention the time involved between calling the code and assembling the players. Which one sounds less traumatic to Liam? In the unit every single nurse is trained and capable of maintaining a trach. Upstairs? Not so much.

I am NOT saying that she was a bad nurse. I am saying that she lacked the training in the skills necessary to care for Liam. I am sure that she and the half-dozen other nurses who have been assigned to Liam but admitted to us that they don’t know anything about trach care (we have met 2 upstairs who do have trach experience and both of them were AWESOME.) are great nurses for what is expected of them upstairs. I just think that there should be a skills assessment checklist matching the skills necessary to each patient’s care with the nurses who have proven that they have those particular skills. If Karin and I are going to be the only experienced trach care hands in the room we might as well just stay home. Teach me how to drop in an IV and we are all set.

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“So do you guy’s have any questions?” Over the years we’ve come to know all of the PICU’s attending physicians pretty well and they all know how much I like to talk and ask questions during rounds but I don’t think she was ready for what I had to say that morning. It had only been a short while after Dr. F came by and dropped the upstairs bombshell on us. In the interim Karin reminded me that if I start out angry and loud then there’s nowhere to escalate to if I didn’t get the answer I needed. As usual she was right and so I chose my words carefully staying away from feelings and impressions and instead relaying the many specific incidents that would prove my point.

“Our pediatrician came by to let us know that there has been some discussion about sending us upstairs.” My voice cracked a little and I could feel my cheeks get flush as I held my anger and I tried to remember to keep calm. “You can’t do that to him. Liam has to stay down here. I can’t let you send him up there, so I need you to listen while I plead his case.”

I was getting used to that taken aback look in doctor’s faces that day.

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There are also legal and policy reasons why Liam should not be up on the floors which I understand the need for but Liam’s care sometimes doesn’t fit those rules. On another admission where we ended up riding out the last day and a half of Liam’s stay upstairs to make room in a full PICU Liam had a seizure in the middle of the night. Again, not surprising or even a big deal. Days without seizures are the strange ones for us. After alerting the nurse that he was seizing I checked the time on the clock and began counting minutes until it was time to medically intervene according to our careplan. The nurse ran out of the room to page the residents so that they could write an order, put it into the computer, have pharmacy fill the order or hope that the drug we need is already in the drug cart for this side of the floor, then bring the medicine and finally administer it. 25 minutes later, when the residents finally made it to Liam’s room to asses the severity of the seizure they found a sleeping baby boy and a frustrated father cleaning up the DIASTAT syringe and surgi-lube packet a full 15 minutes after I had decided to administer our home med that we had in our go-bag rather than wait on all of them to get there.

Let me tell you, hospitals do not like it when parents administer their own home medicines to admitted patients at all. They made that apparent.

Let me also tell you, I don’t like it when hospital policies prevent Liam from receiving the care that he needs and deserves in a timely fashion at all. I made that apparent too.

In the PICU each room has a medicine cart that also has a lock box in the top drawer where emergency medicines can be kept in the room. You know, like FOR EMERGENCIES! If Liam has a seizure here in the unit our nurse (who will have no more than 2 patients assigned as opposed to 5) can call out to a resident (at least three will be within ear shot at any time as opposed to 5 dr’s covering two floors of patients.) who can then say -“…give him a dose of adivan” – the nurse can have it drawn up and ready to administer and all of that can happen in under the 5 minute threshold of medically treating a severe seizure in Liam. The longer you wait after that 5 minutes, the harder the seizure is to break, the higher the doses needed to stop it and the more long-term the fog Liam is put into. Again, how is this beneficial to Liam and his care? It isn’t. In fact a case could be made that it puts him even more at risk on top of whatever the acute illness we are dealing with at the time is. Phenobarb can cause constipation after all.

How we treat seizure issues can affect GI issues. GI issues can impact respiratory issues, Discomfort from either can in turn trigger more seizures and round and round we spin. Managing it all takes a level of subtlety and observation we just haven’t found possible outside of the unit.

******

I could see the residents shaking their heads in agreement and the nurse assigned to Liam that day also. The attending who has always kept her impressions pretty close to the vest anyway listened patiently as I relayed three more incidents (including the incidents briefly mentioned in this post about another nurse who had no problem admitting to us, his parents, how nervous she was to take care of Liam) where Liam was affected up on the floors by things that would never happen in intensive care. Things that the staffing, training, or better communication found in the unit could have helped us to avoid.

I kept my cool, looking over at Karin when I needed to calm my voice. Given the amount of time we spend in the hospital Karin and I are pretty easy-going. It is far too easy to take out all of your stress and worry and anger by being very demanding and confrontational. Karin and I have seen it plenty and done it some but we work very hard to not let that happen. We almost never make demands but this was not a time for being polite. It was a time for showing just how serious this was to us.

“If Liam absolutely has to be released from the unit and brought upstairs until the ileus resolves, since we don’t know how long that could take, I would rather we book an O.R. have surgeon put in a port and send us home with TPN, (nutrition of dextrose and other vitamins and nutrients given right into the bloodstream) because he would be safer at home then up there.” While Karin and I are fully willing to do this it is an extreme solution but I knew that in putting out there they would know just how much I didn’t want to go home. (If it comes to the port thing, which at this point is unlikely, we’d be all over it). I knew I had to wrap it up, I just didn’t know if it was going to be enough and the poker face on the attending wasn’t helping. “You can’t let him go up there. He needs to be in the unit.” Karin squeezed my hand. “So that’s it. I just had to make sure that you heard our case for Liam. That’s my case.”

“Well it was well stated.” The attending gave me a nod without inferring which way things would go and they all moved on to the next patient. Karin and I felt better that at least our feelings were out there now and if nothing else we still had 24 hours to give the same speech to whoever else would listen.

No one else even asked.

Instead the attending spoke for a while with two of the nurses from the unit who used to work upstairs who helped confirm whether or not it was possible for these things to happen up there. Apparently the intensivists have little exposure to the upstairs operations.

*****

Listen, I know that this hospital like the rest of the world doesn’t revolve around Liam and his needs. Should the unit fill up with cases that the doctors deem more severe than Liam’s then we will of course keep a watchful eye over him, and even more importantly over his nurse, upstairs on “the floors”, but given the absence of a step-down or intermediary care unit anytime there is a blank space on that white board and he is in the hospital Liam deserves to be in the unit. I wouldn’t be doing my job as Liam’s father and co-advocate if I didn’t fight as hard as I could to get nothing but the best care possible out of every person who comes in contact with him.

I love this hospital. I do. They have saved Liam’s life more than a few times and for that I will always be grateful. We have met, and continue to meet, people who will have a lasting impact on our family’s life. I may get annoyed and downright angry at some of the things that happen here but they do for the most part have Liam’s well-being at heart even if they get a little confused as to how to provide it.

******

“Hey you guys” Dr. F was back the next morning checking in before rounds. To this point no one had mentioned my little speech at rounds the day before and we still didn’t know if it had worked. “how’s everything going down here. So I uh, . . . talked to the team and there will be no more talk about going upstairs.” He said.

” I just had to plead my case for Liam.” I said, defending myself a bit for some reason.

“Well I guess you did a pretty effective job of it.” He smiled ” I don’t think you have to worry about that for now. No one will be talking about going to the floors anymore.”

What a relief.

Because with a kid like Liam, care is always intensive.