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Showing posts from September, 2017

In the quiet

It's a Friday night and September is closing up shop and so am I ...at least for the night.

I've had a busy day with three new client meetings and some serious deadlines looming for Monday.

The kids are all in Utah...all doing their own things.  They left yesterday so it's been super quiet around here.  I'm not at all use to being home alone with only myself to take care of.  It's a little foreign to me and not something I excel at.  My life has always revolved around the people I love, making sure they are happy and comfortable.  It isn't all bad, being alone, but there is something about having people to belong to, the warmth of another soul milling around to help you feel connected to something.  Someone.  It makes me wonder what will become of me when the kids have moved along in life and there is no one left to care for.  I try not to let those thoughts chase me for too long. 

In all of the quiet, I have been able to get a lot of work done.  I need to clea…

5-3-2

Before I get to this post, a quick update on how our world is spinning, recklessly, out of control. 

Just kidding...

It actually feels like I have a chance to breathe a little.  Things are calming way down, as they always do, eventually. 

Shelbie is doing pretty good.  It has become evident that she has started reacting to her transfusions every week so that leaves us in a bind.  These are life preserving treatments for her and facing the possibility of an ER visit every week is daunting so in my spare time, I'm going to try to figure out how we can avoid or prevent it.  If we can't come to an acceptable solution then I think it makes sense to go back to doing the big, massive infusion once a month in the hospital.  When we did that, she was sick and in the hospital for one week of the month, not weekly.  We'll see.  This weekend, she is excited to see her favorite country band, Florida Georgia Line in Salt Lake, a gift I gave her for her birthday.  Her best friend is flyi…

Thinking out loud

Let's talk about something other than disease and dis-ease...

Sometimes, I think out loud when I should really keep my thoughts to myself.  Especially at work.

I'm working on 4 major healthcare projects right now, from Architecture to the final touches.  They are spread out between 4 different cities and all a different specialty so it's been a great challenge for me.   One of the projects is for an orthodontist.  He is a pretty amazing doctor.  He will have a frozen yogurt bar in the waiting room, massage chairs for the moms and dads, indoor playground, iPad bar, and the list goes on.  The theme he wants is industrial/aged look with a strong theme of 'adventuring'. Empowering kids to think beyond the box.

As we were brainstorming, I mentioned that it would be cool to have old, antique doors suspended over the treatment chairs, with color changing LED lights flooding the space with the color of each patient's choice.  Well...he loved it.  The problem is, I had…

What I Know For Sure

This post is about what I know for sure!


Life is hard and getting harder.  I have I mentioned this before?  Only about a million times I think. Lupus is horrible and so is Ankylosing Spondylitis.  I'm not getting a handle on things and today has been a miserable day while I tried my hardest to work and appear like I'm enjoying a pain free life.  By noon today, I couldn't feel my right arm and I couldn't move my left wrist.   I weaseled my way onto a booked schedule for a massage.  The girl said, "I can't believe you are moving. Do you have a stressful job?"  ha ha..."Yes and Yes."  All of it...enough said.  I don't usually cry over pain but it's getting unmanageable. She was able to get the blood circulating back into my arm so it's slightly better.

I have officially reached the stage in life when I can do nothing but have faith and pray, this I know for sure.  I have prayed continually over Spencer.  Still no word from our GI but the…

Autonomic Testing

I'm pretty happy that I can see the end of this week close...not that next week is going to be any better but changing the irritations is as good as a rest...or so they say, or maybe that's what I say.

Yeah, that's what I say.  Sometimes, you just need a change in the view of all the current hard things in lieu of new hard things.  Sadly, that's what has become of my life.

That was a horrible way to start this post when in reality, Shelbie's testing ended up being wayyyy better than I had geared up for and the great thing is, no one died yesterday!  So, really, that makes for a really great day.

Instead of leaving Thursday night as I originally planned, we left at 4 am on Friday which means I was up at 3:00 am but technically was awake at 1:45 am so that made for a long drive and a longer day of stressful things.  I was happy to make the sacrifice to save on more hotel and food costs.

It poured rain all the way there.  I was so grateful for my car.  It handled the…

The Drunken Duck

Man! What a day! It started out with my run in with a drunken duck.

Driving down the highway, minding my own business, cruising at about 80 mph and a duck just decides to come in for a landing and sit dead center in my lane of traffic! He seemed drunk on pond scum and sweet bread crumbs.  He was completely disoriented as to where he had just landed. He must have thought he had just landed in a some asphalt duck sanctuary.

Oh man, what a dilemma.  I had a semi on one side of me, the ditch on the other and a confused, sitting duck in front of me.  He had a chance at life if he had of stayed sitting but instead, he decided to stand up at the last minute and stretch his neck, just as my bumper kissed his beak.  It was a disturbing moment.  I'm afraid my car will be choking out feathers for the next few days. Sheesh... I had one nerve left.

Anyways, we arrived safely and just in time for Sam's appointment.  They confirmed that Sam is experiencing an abnormal rhythm since surgery. …

Steadiness

In my scripture study this morning, I was struck by the word Steadiness.  

That word has so many meanings as I thought about it more...

Steadiness.

StableEvenConstantResoluteUnwaveringUndeviating Wouldn't life be so much better if we could master the art of steadiness?  
It's a word that I can relate to this week. Those steady, 60 bpm I loved last week have not been seen again in Sam.  His heartbeat is all over the place and continues to get higher and higher with the least amount of exertion.  We are seeing up to 160 bpm now in just a slow walk from the living room to the kitchen and in my shoe box of a house, that's about 10 steps.  
I like to imagine myself never wavering in my thoughts and actions, especially when the kids get sick, when we prepare for more hard things, when we face things I can't imagine ever recovering from.   It's almost a distant dream to ever think that I could face a trial and be steady, stable, constant, resolute, unwavering and undeviati…

It's hard to be normal

It's hard to believe that Sam is one week post surgery.  Today, he went back to work but with limited activity and by limited I mean, all he can do is walk around, nothing else.  He gets to shower on Thursday so he is looking forward to that.

I feel like I'm walking around in a fog.  I mostly feel numb after an emotional weekend.  Spencer has been sick since Saturday and that has been frustrating.  Despite the busy, tiring, emotional weekend, I have been able to solidify a few thoughts.

We were very ill-prepared for this life changing event.  We accepted it, I did minimal research and we just powered through, never stopping to consider the difficulties that we face now.  I see that more and more as I witness the response people have to Sam when they see him.

On Saturday, when we were at Walmart, we stood at the front of the store waiting for a friend we had taken with us.  We ran into my cousin who got a pacemaker about 3 years ago.  I asked him how he managed right after an…

The Heart of a Mother

I hit the ground running when I got home from Salt Lake.  I had back to back meetings from Thursday night until Friday afternoon.  Sandwiched in between appointments, I said goodbye to Spencer for his official move to Utah.

At noon, I ran through the front door and he was standing there, anxiously patient for me to arrive so he could take off.

Without a breath, I ran through the rapid fire questions.

"Spence, did you pack your medications?"
"Did you get the comforter?"
"Did you grab your 72 hour kit and 1 month food storage bin?"

"Yeah, I got everything.  It's all there.  I gotta go." was his reply.

What kind of a mom would I be if I just waved him off with a simple goodbye? Certainly not a smother mother, the kind he has come to love and adore!

"Okay but first...I need to tell you 4 things...Pay attention...

Spencer, stay away from the world.  You have no business being in the world, that's not where you belong.  Second, don't …

Heart and Home

Sam and I made it home last night.  It was a long, quiet, upsetting ride but when we walked in the door, the kitchen was full of friends cheering for Sam!  It was the greatest thing ever!  It made all the difference to Sam and he felt so loved and watched over. It was Spencer and Shelbie's idea!

They made him this great poster.



They kept him busy all evening so I could go to work.  When I got home, his spirit was definitely lighter and he seemed okay so I went to bed.  At about 2 am, he woke me up and was not okay.  He is having some issues with post trauma I think.  He has not been able to sleep well all week long.

Today has been a little more of the same, just trying to adjust to our new life.  He is still having lots of breathing issues and he is still having palpitations.  He has been asking me to take his vitals every few hours because he is worried something is going wrong.  I gladly check it and each time it's dead on 60 with exception...

He is so winded.  Worse than b…

The Bulldozer

Last night, just after midnight, I sunk into the vinyl recliner that sat by the large window in Sam's 4th floor hospital room.  Sam had finally closed his eyes.  I put my head back and thought about maybe falling asleep but then a wave of anxiety hit and there was no way I was going to find my way behind the fallen lids of my eyes.

So...I slipped on my sandals and headed to the stairs.  I ran all the way down the stairs, to the lowest parking level at the hospital and then I turned around and ran all the way up to the highest level of the hospital.  I did that twice...just running as fast as I could, away from all the emotions that threatened to overtake me.

When I got back to Sam's room, I stood by the window that overlooked the valley and watched the airplanes lined up to land at the airport.  They hung in the sky like paper lanterns that had forgotten where they were going.  I thought that it was a perfect analogy for how I was feeling last night.

The natural thing to feel…

Keeping The Pace

What a longish day!









Everything with Sam's pace maker surgery has gone so well; such a tender mercy.  Our doctor has been so amazing and his Fellow was outstanding.  They spent so much time prior to surgery educating Sam on what is wrong with his heart.  They even drew pictures to help him understand the procedure.

When we first checked in, the nurse told me that Sam would in fact be under general anesthesia and I felt like a ton of worry had been lifted.  All along,we were told he would be awake.  That amazing feeling lasted all of 20 minutes until Anesthesia came in and said, "No, I don't feel comfortable putting him under with the condition of his lungs and liver."

Ugh...so awake he was.  We came here just planning on a one lead, pace maker.  They determined that because of his Right bundle branch block they needed to place two wires in his heart.  One in the upper right atrium and one in the lower right atrium.  They also needed to access the lower parts of his …

Surgery Eve

We made it to Salt Lake...a trip that was a little longer than usual.  A couple of hours from home, Spencer called and Shelbie was having an IgG reaction...I think.  She had lost her peripheral vision in her right eye and got upset.  She told Spencer to get her some medication but she told him the wrong meds and the wrong dose!  He was just doing what he was told but she ended up taking triple the dose she was suppose to take.

I had to pull over and do a little research about what do with a slight drug overdose.  By the time I finished that and communicating with them, Sam was feeling sick so I had to round up some nausea meds for him.  Probably nerves and not eating.  It's never easy.

So far, I think they have avoided an ER trip.  I'm so glad Spencer is there but I really should have insisted that they come so I can keep an eye on things.  It also taught me that I need to come up with a chart of problems/symptoms and what med to take and how much.  I just can't trust th…

Standing Amazed

I should break this up into a couple of posts rather than one long one...but here we go!

Friday was Spencer's birthday!  23 years for this son of mine.  He couldn't come home from Utah until Saturday so we celebrated then.  

Back in May, we stumbled upon this little cafe in a neighboring small town.  With our food, we each got entered in a drawing for a chopper motorcycle.  The ticket Spencer got was his birthdate and the drawing for the bike was the day after his birthday so he was sure it was a sign he would win the bike.  He has held on to that ticket all these months.  Part of his birthday request was to go back for the drawing and pick up his bike!

So we did!  Holy Cow...that little restaurant had transformed into a biker bar!!  It was hilarious and embarrassing.  We have had some friends visiting from Colorado and they were with us.  I really had no idea what the event would be like but clearly, not a wholesome family experience  but it was still kind of fun to see all …

That boy!

Sam loves to think he is invincible.  He loves to push the limits physically.

Tuesday morning, I decided to gently tell him his heart is showing increased signs of struggle and he should take a little more caution in how far he pushes himself.  I tried to balance the reality with what I know he can handle emotionally.

Well, he got mad.   "I've had a heart problem forever, it's not just going to quit now, the week before a pacemaker!"

"Even hearts have an expiration date.  God doesn't want us to do dumb things to create more trouble than is necessary.  Just tone it down, that's all." was my reply.

He left for work right after, mad.  He slammed the front door and was gone.

About 2 hours later, he came back through the door with a bruised face and the skin off his nose with blood all over.

"What happened??!!"
"I'm not telling you!"
"hmmmm, you did something crazy to prove a point that you can do whatever you want."

H…

The Rumble and Roar

I'm becoming quite acquainted with the familiar rumble and roar I live with nearly every single day!

What is the rumble and roar?

It's the rumbling of anxiety and panic that comes out of nowhere and roars in my head.  I'm never expecting it.  Today has been a rumble and roar kind of day; when somehow, all the busyness in my head scatters and everything I spend energy running from, surfaces.  It's a horrible feeling.

Life was better before MyChart I think.  I've only become acquainted with it since we started going to U of U medical center and Huntsman's.  It's the preferred way that our doctors keep in touch with us.  This morning, I got the official results of Sam's 48 holter monitor test.  Several times his heart rate fell to 28 beats per minute.  That's 2.27 seconds without a heart beat.

I also got the written results of his EKG from last week and what was sinus bradycardia has now become a Junctional Escape Rhythm with a right axis deviation.…