medical equipment

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.

 

All the news that’s fit to blog.

When Liam was born I had a private website through the hospital’s Carepage program to send out posts to approved subscribers (family and friends). It was a wonderful way to send out information without having to make a whole bunch of phone calls and was of course the genesis of what would eventually become PressureSupport.com.  I wrote nearly every day about the details of almost every day for a while but eventually the day-to-day waiting game that is the NICU became a slow grind and news would come out more slowly over weeks. We’d get emails and phone calls from family and friends who were sure that the reason I wasn’t posting was because something bad must have happened. I know they all were just showing how much they cared and we of course appreciated whenever someone would want to check on us but really I just got tired of writing “waiting for Liam to put on more weight” over and over and over again.

It was when I realized that I should be careful about making this the family’s only outlet for relaying Liam related information. The stress and responsibility of keeping everyone up to date with every little thing wasn’t a precedent I was confident I could keep up long-term and so I stopped using blogging to describe the day-to-day details of Liam’s medical needs or problems.

Even though I actually post more and go into greater detail during hospital stays and times of great stress, this blog is not a blow-by-blow account of every little medical thing that Liam encounters but more of an episodic narrative about the attitude and hopeful positivity of Liam’s, and by extension our family’s, life overall.

But whether I liked that aspect of it or not, just like that Carepage, this is a great way to get information out to family and friends all over the country and I should try to find a happy medium in using in that way with more updates on the goings on here in The Olsonshire.

I’ve been asked by enough acquaintances and co-workers the same bunch of questions lately and I figured that many of you, my family and friends, might be wondering some of these same things, so I put together a list and this way I won’t have to make a whole bunch of phone calls.

It’s like a FAQ for Liam’s life right now.

How’s the walking going?

Why it’s going freaking awesome thank you very much. We are still trying three different walkers to see what works best for Liam but we are having a blast watching him put in so much effort. He is truly an inspiration to all that see how much effort and determination he puts into everything we ask him to do. Unfortunately walkers are not cheap and even once we find one we like it probably be purchased by the school and kept there for him (and any future students with muscle tone issues like Liam’s) to use during his school day.  It’s not an ideal situation of course, we would love to have a walker for him at home, but walkers don’t grow on trees.

What about school? Almost finished?

School is great but yesterday was Liam’s last day. Luckily our school district has an extended school year summer program so Liam will go back to school in a few weeks so we can try to keep up with all of the progress we’ve made in his physical therapy. Karin also got Liam enrolled in some supplemental therapies at an outpatient facility to stave off any regression.

How about the Van?

Oh the Van is more incredible than I ever could have imagined.  How else would Karin have been able to bring Liam to surprise me at work on Father’s Day? We are still getting acclimated to the true freedom, safety and convenience that the van allows and so I still get excited and happy getting Liam in and out of it.

Speaking of the Van, now that you have it I guess there’s no more ‘Liam the Lion Fund’

Ah yes, money. The topic that makes me so uneasy talking about that I bury it in a post of fake questions and adorable photos. Well the ‘Liam the Lion Fund’ is not going anywhere. Not by a long shot. First of all, and without getting into too much detail, the van isn’t completely paid for yet. We did have to finance a chunk of it but we couldn’t wait any longer. It had to be bought now. We’ll continue to raise funds to pay down the remainder left outstanding. Secondly there will always be further equipment that Liam will need that will not be paid for by insurance like the walker we already spoke of but also a bed (adjustable like a hospital bed) and whatever other stuff I don’t even know that we’ll need yet. The hallways and bathroom of our home aren’t nearly wide enough for a wheelchair or for safely bathing an ever-growing boy so some renovations made to accommodate his medical needs will be inevitable. All of that says nothing of the possibility that a law gets overturned and my insurance company says “Hey Olson’s, you know that lifetime cap of benefits that you had already exceeded before he even came home that we imposed but then rescinded when the law forced us to? Yeah we’re able to bring those back now so good luck paying out-of-pocket for those meds, nursing help, supplies, and hospital visits.”

And after any benefits to Liam and the costs incurred by his medical needs, the long-term goal of the Liam the Lion Fund has always been to continually raise funds to donate to our local children’s hospital and any other special needs charities that we decide on. That’s the goal at least, but we are a long way from there.

There will still be Liam the Lion Fund bracelets. There will still be pasta dinners and art auctions, hopefully sometime soon there will be a website and other opportunities so stay tuned.

Thank you to all of the friends and family who have donated. We wouldn’t have made it this far without you.

Ok, well none of us like talking about money. How about all these adorable pictures! You have been taking such wonderful photos of that kid!

Well thank you and yes, yes they are wonderful photos but I didn’t take a single one of them. Karin has been killing it with the cell phone camera lately and these are the kind of thing that I get sent to me at work every day to brighten my day. Well except for this nighttime pic which I was present for when she took it. It’s a picture of true peace and relaxation. That glowworm (it’s actually an off-brand glo-seahorse) has been with Liam in his bed since the NICU but we haven’t turned it on in a couple of years. He actually seemed like he remembered it.

So there you go. School has ended, Liam loves using a walker, the van is still awesome though as of yet remains unnamed, and we continue to need money (don’t we all). Now you are all caught up. I’ll try to do this more often.

I’ll talk to you soon.

My Little Walkin’ Man.

Baby steps.

He was never supposed to take any.

Low muscle tone. Lissencephaly. Global delay. Seizures of multiple types constantly racking his brain. A three foot circuit (plastic tube) anchoring him to a 20lb ventilator. Liam was never supposed to be able to walk.

Were you a casual acquantance, If you had told me 3 years ago that Liam would walk I would have clumsily said “..uhm well… maybe some day, uh, we don’t really know what he’ll be able to…do.” and then hid somewhere to cry a little about all the things I would never get to see my son accomplish.

If you had told me 2 years ago that Liam would walk I would have said, “Well, we’ll see.” and then quickly changed the subject while thinking to myself, you don’t know that it’s just not possible that Liam will ever walk and you look so happy asking about him I don’t want to bum you out. Then I’d just show you a picture on my phone and we’d move on to talking about how cute he is.

If you’d told me a year ago that Liam would walk I’d happily explain almost every detail of the medical challenges listed above and let you know that Liam will never be able to walk but that was ok. He was my big boy and really all I ask of him is for an occasional smile when I come home from work at night. I’d answer any and all questions without any embarrassment, worry, or uneasiness. trying to convey that, yes I know my son won’t ever walk and so should you. I don’t worry about it anymore and neither should you.

If you had told me 1 month ago that Liam would walk I’d have shown you a video of his first steps(!!!!) tempering your excitment by explaining that Liam will never be able to even stand without the support of his standing equipment and walking was only possible with significant assistance of his physical therapist. No sense in getting anyone’s hopes up that after a few steps in school Liam would be running around causing trouble. After all, a month ago I still thought it impossible.

But that was a whole month ago.

That was a month before this.

That was before I knew that they made walkers that could fully support the body of a little boy with low muscle tone.

Today?

Well today I am AGAIN reminded that nothing is impossible with this boy.  If I ever tell you anything that includes the words “Liam” and “can’t” in the same sentence you have my permission to slap me and remind me of the important word that sentence is missing…

“Yet”

I’ll talk to you later.

Changing the Game

Hey!

Pretty awesome picture right?

You have no idea.

So longtime readers may remember our troubles with our medical supply company last year. Well imagine, if you will, that times a thousand. Sometimes you need to throw in the trump card and change the game. Sometimes a picture can be that trump card.

I work for a large international corporation. Without getting into the details, let’s just say it’s big. Really big. So when they make decisions on health insurance and the like they are thinking about hundreds of thousands of employees. On January 1st my insurance coverage changed companies.

The change hasn’t been nearly as bad as I thought, since so far they are covering close to everything my last insurer did, but the process of changing was a nightmare. Each and every item on our four page order guide had to be re-evaluated and re-approved involving hours and hours of phone calls over the course of three days.  Hours and hours of phone calls.

Karin is a saint.

After the first day filled with roadblocks and attitude Karin had an idea. An epiphany  if you will. A game changer.

“Do you have an email address I can use if I have any questions before we talk again tomorrow?” Karin asked the supply company rep. and her plan was set into motion.

Numbers on a screen. Ventilator circuits, sterile sponges, oximeter probes, suction catheters, no matter that these things are essential to people’s lives, these are just invoice numbers on a screen going to “patients”. Last name, First Name, Shipping Address. Not people, patients. Numbers on a screen.

Until someone throws them a curve ball. And Karin? Well she’s got a hell of a hook.

Off went the email. A simple hello, and a thanks for working on the list but with the picture above as an attachment. The poor little customer service rep. Karin really shouldn’t have assulted her with that much cute at once. It’s not even fair.

“Oh My God! Your son is the most adorable thing! I’ve printed out the picture and it’s hanging at my desk.” Our rep called early the next day. First call of the morning, as a matter of fact. “Let’s run through this so I can make sure we get EVERYTHING approved and sent to you now that you’ve already made me cry at my desk today.”

Like I said . . . Game Changer.

Gotta keep an eye on my Mom, She's sneaky like that.

Take that Big National Medical Equipment Company!

Ok, so you may remember a few weeks ago I was complaining about our Big National Medical Equipment Company’s new shipping policy of our medical supplies. Especially our life saving and life supporting supplies.

Well what did I find on my porch today but our neo-sucker!

One neo-sucker.

Now a neo-sucker is not life saving or supporting. While useful, it  is not essential or really all that important in this house.

This is a trinket.

It’s a toy, a 30 cent piece of plastic.

It’s a neo-sucker.

Like I said it’s useful. When Liam is sick or particularly congested the neo-sucker is a great tool to attach to our suction rig to get at all that stuff in his nose or the back of his mouth but it’s nothing a ball syringe available at any drug store can’t do.

“So why Eric are you now complaining that the good medical equipment company rushed out this non-essential but useful piece of your medical arsenal? They can’t win with you can they?” You may be asking. And I’m glad you did because here is why…

One neo-sucker.

All that packaging, and the trucking, and the UPS Shipping of one neo-sucker.

I have plenty of neo-suckers. We’ve been getting up to a dozen neo-suckers per month for the last 2 years. They are understandably disposable in a hospital setting but at home, and only being used by Liam (and sometimes his Mom.) we can boil neo-suckers. We can clean them, we can re-use them, WE HAVE THE TECHNOLOGY!

Anyway, neo-suckers usually come in packs of twelve shoved in a big huge order of dozens of other little tubes, filters, and miscellany. All told it adds up to 6 to 8 boxes of hundreds of individually wrapped supplies. So why is this teeny-tiny-neosucker getting its very own cardboard box? Why is this little guy given his very own UPS ride out to my house all by himself?

Because Big National Medical Equipment Company doesn’t care.

I’m sure that at Target or Amazon or any other type of Big National [fill in the blanks] Supply having all your products boiled down to UPC codes and numbers is an efficient and streamlined way of automating shipments. In medical supply, some pieces are more important than others. In medical supply running out of one product is an inconvenience while running out of another is an ambulance ride. In medical supply one piece of plastic can be just plastic while another can be a life.

There needs to be some kind of prioritizing of pieces. It is boxes like this at my door that remind me that the supplies that mean so much to the health of my child and countless other patients are simply numbers on a screen to Big National Medical Equipment Company.

This neo-sucker is not the first instance. We once received a three-inch piece of tape in similar packaging. It’s called teddy bear tape and it helps to hold the pulse oximeter sensor in place on Liam’s foot. Let’s be honest though, it’s tape. a small roll of athletic tape will do the job but teddy bear tape comes pre cut in three-inch strips in packs of 100. We’ve received ONE THREE INCH STRIP OF TAPE on non-stick paper sent UPS to my house.

Every time I get one of these ridiculous packages where the shipping obviously cost excessively more than the value of the contents I think of AJ.

AJ was our delivery man for medical supplies before Big National Medical Equipment Company bought Small Regional Medical Equipment Company. AJ would deliver our 8 to 12 boxes each month and fill our oxygen tanks every other week.  He’d let us know what products were on backorder and ask if there was anything else we needed. AJ would check in on Liam and say hi to him every single time he came to the house.  Aj would run equipment we needed in an emergency when we needed it.

Can you tell we liked AJ?

Well AJ doesn’t have a job anymore. Apparently it’s more cost-effective to have cranky UPS man who tosses boxes on the porch without knowing or caring what’s inside, who can’t tell us if any of our supplies are backordered or delayed and has no idea when they may be on their way. Now we get packages with one neo-sucker inside.

I keep asking myself how many packages containing a single product that costs only pennies could have been delivered for free on AJ’s truck as he came to my house to fill my oxygen tank?

I may not run a big national medical company but I’ve run enough kitchens to know that if your to-go container costs you more than the food you put inside it you’re doing it wrong. I don’t care how big your company is I’d be surprised if you could show me numbers to convince me otherwise.

I suppose if most of our supplies came UPS but we still had someone who could run emergency equipment out to us if needed there’d be less of a problem but we don’t even have that. Ventilator circuits or suction catheters, Teddy Bear Tape or Neo-suckers it’s all the same to Big Medical Equipment Company.

It’s all just numbers on a screen.