Monday, March 30, 2015

Pulmonary Arteriovenous Malformation

I talked a lot about what Pulmonary Arteriovenous Malformations is doing to me emotionally but today, I wanted to post about what it actually means.

First of all, it's not really 'holes' in the lungs.  They are more like lesions.  But we'll get to that.

Basically, it is a very rare and complicated vascular disease.  It can strike anywhere in the nervous system, brain, lungs and liver.  We don't know how extensive the disease is in Sam but we do know that he has multiple lesions throughout both lungs.  This kind of AVM is quite rare.  The connection between the pulmonary arteries and veins are faulty and bypass the capillary system altogether.

Normal arteries carry blood from the heart to the lungs and from there gets sent out throughout the rest of the body, taking with it rich, oxygenated blood as it passes through the capillaries.  The blood is then returned to the heart by way of the veins. The capillaries job is to give up the oxygen and remove the waste.

In AVM's the capillaries are bypassed and so this creates a lot of pressure in the lungs and the heart. This makes the AVM's larger and creates more pressure. It also makes the heart work harder to move blood through. It also causes an increase in waste product and decrease in oxygen because the blood isn't being filtered through the capillaries. The result is a tangled mess of blood vessels that are very ineffective.

This disease can be very painful as it progresses.  Here are some other symptoms caused from AVM's


  • Co-ordination issues, muscle weakness
  • Memory and thought problems
  • Headaches
  • Seizures
  • Stroke
  • Heart Failure
  • Progressive neurological difficulties
These are just a few of the complications.  It's a given that one will experience shortness of breath and clubbing of the fingers as well as complications with breathing. Bleeding problems are also very common. 

The disease can remain stable if symptoms don't appear until age 40 or 50 but in young people and when other diseases are present, it's extremely complicated and often progresses.  If a person just had one AVM, they could do surgery to repair it.  With Sam, he has so many, it would be nearly impossible to surgically repair them.  His only chance might be a heart/lung transplant but that would be difficult given the complications he already has with Dyskeratosis Congenita.  

So, it's all very complicated and I'm just starting to wrap my head around this. 

Currently, Sam is experiencing over 200% pressure in his lungs and a 35% increase in pressure in the right chamber of his heart.  Instead of the right chamber receiving blood that has been depleted of oxygen because it was all delivered to the organs, it is full of oxygen and creating the pressure and shunting.  the cardiologist told me that 35% is very high but they won't panic until he reaches 40-45%.  Who knows how long it takes to get there.  He could stabilize but he might not either.  Only time will tell.  Keep in mind, the right chamber of your heart is not designed to hold on to oxygen.  

It's a mess.  It's a mess that comes without answers or at least not easy answers. I'm not sure what happens next.  As for Shelbie, she will see the doctor next week and hopefully do more testing for Pulmonary AVM's or receive her official diagnosis...or not.  Her lung pressure is at 168% so not quite as high as Sam but far from normal.  Her heart pressure is not elevated at this time which is great news!   Her CT scan is in line with a Pulmonary AVM diagnosis so, it won't surprise me if she has this issues as well.  

It makes for a scary and unknown future and a complicated one as well. 

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Trampled Upon

So, this is a slight deviation from the medical life we lead...though not entirely.

It's been a pretty crazy weekend.  Shelbie had her IVIG on Thursday.  It went well, nothing out of the ordinary in the infusion.  Friday was fine too, even Friday night.

At around midnight on Friday, the headache started for her.  By early Saturday morning, we were in the ER trying to get pain relief that about a dozen remedies at home couldn't quite catch hold of.  They did the usual cocktail for these horrible headaches and after about 3 hours or so, we headed home and Shelbie was feeling better.  That's usually the end of it but that darn headache came back with a vengeance and we ended up back in the ER by late in the evening.  I was pretty miffed with the ER doc the second time around.  She was in more pain than I have ever seen her in before.  It radiated from the top of her head down to the bottom of her spine. They gave her  Toradol and Steroids since we were now treading in the Meningitis zone but no pain meds.  I asked the doctor if he could give her something for the pain and maybe she could relax some so the other meds could work.   He stood there and said, "No.  I just can't think of any pain medication I could possibly give her."  I had a long list of pain meds he could have given her but I happen to know he is very much against narcotics so...Shelbie laid in a bed, at the hospital and suffered for hours!!!  We finally just left.  What a waste of time.  So, it made for a very long and painful weekend.

That's the back-story...today I had to get another passport photo taken.  This is my third try, it keeps getting denied by the government because it's too dark, too light...always too something.  So, I ran into Walgreen's after a morning of cleaning houses.  I didn't think I looked that bad but definitely not my best. I figure the government doesn't know what I normally look like and it's just a passport photo so who really cares.

They pulled that picture up on the screen and I just about died!  I could see my life written all over my face and it wasn't pretty!  It was a trampled mess!  How come no one has told me that I look like I've been dragged behind a freight train? No one told me I have deep, dark circles under my eyes with deeper crevices leading to the circles.  Passport photos don't lie people but apparently, my friends and family do!

I couldn't decide if I should be proud of my stress worn face or run right out and get some collagen and Botox!  I compromised and ran to the age creams and bought a basket worth of lotions and potions; all in an effort to save face! LOL...

I never thought of these chronic problems would write their story upon my face. I think in the past year, I've aged a decade or so! Not only does my face look trampled upon but I sort of feel like that as well.  Oh well... these potions I bought promise results in 7 days...Here's to some vast improvements!

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Sunday, March 29, 2015

What IF...

I find this whole process of living and dying so fascinating.  I don't think it would be so, if I was someone who had never really had to face anything too difficult or at least anything that messed with my foundation of mortality.

I find it fascinating to experience firsthand, how you can go from just fine... to not... in seconds, without an ounce of warning and with a toilet paper commercial tipping you off your precarious position of balance.  I hate it actually, but fascinating all the same.

I posted earlier this week about the patterns of grief I've been noticing, but then I deleted the post.  I hadn't fully completed my thoughts and accidentally published it. There are definite patterns though.

Overwhelm and shock are one of the first things you feel, mixed with a healthy dose of denial.  Then comes acceptance; at least in some degree.  I don't think acceptance is something you resolve just once and then move on.  It think it can be an hourly experience.  After whatever amount of acceptance you find, there seems to be this lull when things actually feel 'normal'.  Some kind of newness that feels okay.  It's here that you start to wonder what you got all worked up about in the first place.  It's sort of a weird place to be. And finally, something goes wrong, a pebble in the peace you tried so hard to find and you're back to overwhelm.

I have discovered something powerful this past week as I find myself in the place of resolve and 'normal'.  It's a place where I am open to possibilities, clarity and understanding.  And truly, I have come to believe that it is a place that God provides for us so that he can send more tools to help us with the next step.  I believe that more than anything!

So, here I am in a week that has been incredibly inspirational, incredibly Holy as I feel the spirit working in me, teaching me, inspiring me.  With a little luck and a lot of Faith, I will grasp the take away message... which is...

Two days ago, my dearest friend Alisa received some horrible news.  She is in the worst possible stage of Melanoma cancer and she has been fighting like a champ for years.  It came down to just one measly tumor by her liver and now...her abdomen is scattered about with cancer.  She can choose to keep fighting with more chemo and continue to suffer long and hard, or endure and transition to the next life where she will be pain free, worry free and care for her children and husband as an Angel Momma.  I don't use the term 'measly' lightly, it's just that this girl has been clear full of cancer from head to toe at one point and through intelligent research, incredible doctors, an amazing and supportive husband and family, faith like I've never seen before, she literally melted that cancer away so it was a miracle that all that was left was one little tumor.  It has proven to be a stubborn and very aggressive one!

At any rate...She has received the most moving comments on her blog post about this situation she now faces.  I wanted to re-post what one of her readers commented.  This quote originated with Eve Ensler who faced her own cancer battle.

"What if our lives were precious only up to a point? 
What if we held them loosely and understood that there were no guarantees? So that when you got sick, you weren't a stage, but in a process. And cancer was a process, just like having your heart broken or getting a new job or going to school or becoming a teacher? 
What if rather than being cast out and defined by some terminal category you were identified as someone in the middle of a transformation that could deepen your soul, open your heart and all the while even if and particularly when you were dying, you would be supported by and be part of a community? 
And what if each of these things were what we are waiting for?”

I love this quote!!!  So, my point is...this week, I have learned again that it isn't really about life and death.  It's just about life.  Life here...life there...We aren't in a stage, we are in a process of living life and life never ends it just changes into something deeper, better, more than we can even imagine.   It's just that we cling so tightly to this imaginary dream that life is only here, what we know.

I want so badly to remember this empowering idea.  I want so badly to know this and feel it and let it reach into every single strand of my being.  I want to become this; embody this.  I want so badly to not feel scared for the future.   What if that could really happen?  Wow...just imagine!  There could be nothing frightening anymore.  Nothing.  That would be really amazing.
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Friday, March 27, 2015

The Current

When you are in the thick of things, it's hard to see beyond what is happening.   When you just live each day, doing what needs to be done, the subtleties of life get lost on you.  Probably because your focus is elsewhere.

It hasn't been a bad week.  It's been okay.  There were some uncomfortable moments but for the most part, I would say, I 'endured it well.' as the old saying goes.  We actually had some pleasant moments, moments when I felt somewhat normal.  Basically, I have felt to have been in a good place.

This morning, I met with a friend to help her with a remodeling project she is doing.  We don't talk a lot but when we run into each other every few months, we just pick up where we left off.  We usually do a ton of laughing because she is awesome like that!  Their whole family is awesome and our boys are friends and both serving missions.

We enjoyed our usual good time together.  Working on plans and laughing some.  When I was getting ready to leave, she said, "Are you okay...really?"

"Ya.  I'm good."  I replied, even cheerfully, you know, with just the right amount of falsetto but not too much.  Actually, it came quite naturally even.  It was an honest statement for the moment; the week.

"You seem really sad. Something is not right."  She said in return.

It caught me off guard a little.  I have never felt I carry around a weight of sadness where ever I go.  I feel like I really do make the most of each day and try to find happiness no matter what is happening.
But, as I paused for a minute to take a quick inventory of whatever was happening inside of me, I could feel that uneasy sadness floating just below the surface tension of getting through the day.

Like most currents that can carry you away before you know it, there is the current of grief.  Today wasn't the first time I have felt this undertow of something less than desirable in my life but it's the first time I wanted to give words to it.

My days have become very much an exercise in paddling my way through.  I can't touch the bottom of this and if I quit, I'll surely drowned so, I paddle away, like mad, with my head above the level of the current feelings that can drag me under. I can be whatever I need to be, even do whatever I need to do, but it may not always be enough to mask the very thing tugging me closer to the bottom.  It may not be enough to move me forward, pushing me to the next thing. If I had it my way, time would stand still.  It would stop.  I don't want to arrive at whatever is coming next; good or bad!  I just want to stand here, still.  I know this place. I don't love this place, but it is at least familiar.

The undercurrent of feelings and emotions does move me whether I like it or not.  That's what currents do, they move.  The challenge comes in fighting the current and exhausting yourself or letting it carry you to the next place of learning, the next place of understanding, the next big thing.

I feel like physically, I have more choices to take my day where I want it to go.  But it's the current below  that ultimately has it's say.

I've decided that it is somewhere in this current where the most overwhelming fatigue resides. I think that explains my eternal battle with tired, heavy eyes, regardless of the number of hours I snatch throughout the night to rest them.

It's somewhere in this current where acceptance can be found, though it is not a treasure I have uncovered in it's boggy bottoms yet.

In this current is something that resembles congruence.  Maybe the fatigue comes from trying to live a life that isn't exactly lined up with what the Universe is bringing to the table.   Is the secret, living in the current state of whatever it is?  Is the current where I need to spend more time?  But what if it's always the current of grief?  That heavy, sadness that you can never escape...

I don't have the answers.  For now, I will continue to live with my head above the current and continue to kick against the questions til I get a little closer to discovering the mysteries life has brought.


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Wednesday, March 25, 2015

Somewhere in the telling

Having a blog, or several blogs, over the past few years has been an interesting experiment for me.

It's evolved from a blow by blow menagerie of current events and report of 'weather' types of things meant just for my family, to something with a little more meat.  It has been one of my greatest challenges.

Despite my seemingly public display of sarcasm on social media, I am a very mysterious person; private too but I think mysterious describes me better.  I am a chameleon of souls, fitting in whenever and wherever and acting out whatever the moment dictates. I can be in the farthest depths of sadness, yet no one would be the wiser.

To write my blogs with more honesty and less self censoring is one of the hardest things I have done and I still don't do it well. I read with jealousy, other people's blogs who just lay it all out there.  All the good, the bad and the horribly ugly stuff.  The feelings you never want to admit to a soul, not even your favorite friend. I love reading those blogs!  I love to see the process of living played out in real lives.

I have a hard time admitting to even myself, the chaos of a life I have.  I have become so good at just narrating my life as a 3rd person reporter on the 10:00 news.  People have often said I should write a book.  I have written a book.  It has a title and everything. I even submitted that book last fall to a publishing company in New York and they basically told me it held great promise if I could just 'own' the story.

Not a day goes by that I don't think about that phrase, owning your story.

With everything we have had fall onto our already teaming plate of life, I have wondered about quitting the blog world and just writing on one of my other blogs that remain hidden away with pen names and privacy walls so it is only fit for my eyes.  I've thought that maybe people are sick of hearing our sad, and somewhat pathetic story.  I've wondered why, if it's so hard for me to admit my own life, I continue to try every day.

Today, I realized that it comes down to one word.  Witness.  There is something about having your story witnessed. It's like that old, philosophical  riddle, "If a tree falls in the forest and no one is there to hear it, does it make a sound?"

 For me, I write because the paper and the pen is my witness.  The proof that it happened.  That I was here.  That I lived. That I felt.  That I loved.  That I did.  That it hurt.  That it mattered.  That I am.

There is something deep within me that drives me to tell the story.  My story.  I am realizing that it's okay that my story isn't full of funny moments like I wish it could be.  It's become a story of becoming.  I'm facing heart wrenching things and some days, I feel strong and some days, so very tired and weak.  It is all a part of the story.  There are some days, most days, I resent that this is my story.  I want to be writing a different story.  This quote speaks volumes of how I feel...



I know that at the end of the day...that very long day when it is all said and done, it will be discovered somewhere in the telling of my stories that it was the best story ever.  I hope when that moment comes, I will see that it was a story worth living; that I will see the 'becoming' that comes with living and enduring through the trials.

That's what I hope comes of telling stories.  And so it goes, somewhere in the telling...
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Tuesday, March 24, 2015

What are you dying to do?

Yesterday, somewhere between listening to a talk on the mystery of ants to a seminar on Pulmonary Arteriovenous Malformations, I heard a man say, "What are you dying to do?"  That struck me as an interesting statement we hear all the time.

"I'm dying to..."

From day to day, we say it all the time, mostly in relation to trivial matters like that hot fudge sundae we are dying to taste, the big sale on the Coach bag you've been dying to get or a restful trip to Cancun.  We die for any number of things.  But, when the rubber meets the road and you realize that maybe you are dying, what is it you are going to do with this one very precious life you have been given?

What then, will you be dying to do?

It's been a week of struggles.  Yes, It's only Tuesday morning but the last three days have been a big struggle; on so many fronts.  Shelbie continues to feel rotten and I continue to feel rotten because there is nothing I can do to make her feel better.  We are doing everything possible and she is still finding it hard to breathe.

It seems, that at some point in this process, everything breaks loose and words are said and tempers flair but it's all in an effort to realize and speak your truth.  That happened late last night.

We were all tired, sick and tired, when it broke loose.  After everyone had a chance to let off a little steam and do a little crying and get a little mad, we were able to make some headway in this battle of whatever it is we are battling.  I say that, because we are battling more than just a rare disease or two.

Shelbie asked, well, she screamed really..."Why aren't you doing anything to fix this?  You always fix things?  Now you just stand there and do nothing!"

Finally, I could say what I have wanted to say for so long..."I ...CAN'T ...FIX ...THIS."  I'm understanding Pulmonary AVM's more but I can't fix it.  I don't know who can fix it.  It felt so good to finally speak those words.  It wasn't fun, but I felt a huge burden had been lifted.

To say it was an easy night would be a raw exaggeration.  It was anything but!  However, when the tears had been spilled and the hardest words had been scattered about, we gathered each other close and shared some love, some prayer and some peace.  It was good as we all laid across my bed and finally shared a laugh.

I asked the kids...What is it you are dying to do?  And that, may be the hardest question in the world.  To be uncertain of your future, I mean really uncertain of your future.   Part of the fear in dying is dying without a purpose, without knowing what your passion is, your intentions...to just be tossed about in the chaos of uncertainty is truly where the fear lies; it's not in dying but in trying to figure out how to live.

Today, is another day to figure out what it is we are dying to do...


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Saturday, March 21, 2015

Different Than I Thought It Would Be


I thought, that the day the doctor told me my kids had a fatal lung disease, would be different.

Actually, I didn't really think about that day at all.  Ever. I thought about that day for other mothers; how they might feel if they heard those words. Those are the words reserved for the ears of another, not mine.

So, I carried on, not really believing anything too serious was wrong with my kids, even feeling guilty some days that they weren't sicker because surely, by all logical standards, they should have been.  People die from this disease dyskeratosis congenita.  Horrible things happen and they die.  My kids were flourishing in the long shadows of this disease.

It was by chance they found the heart and lung problems that divided my world between then and now.  Maybe the increased lung pressure was just a small hole in the heart. Devastating, but patch it and let's get on with living.  Then, it became more puzzling.  Maybe the increased pressure in the heart was just a couple of  lazy valves that were distracted from their timely job.  Funny, how we can wonder away just about anything; everything really.

One minute, a hole in the heart seems like the end of life as we know.  Now, finding out the holes are in his lungs, not his heart...well maybe it really is the end of life as we know it. Funny how we find it so easy to merge from bad to worse without even thinking about the next move.  It just happens.  I can handle 'this', but I can't handle 'that'.  Before you know it, 'that ' is all you have and 'this' seems more like a common cold.

Pulmonary Arteriovenous Malformations.  It rolls off my tongue now.  It once drowned in my throat from the cracks in the ducts of salty tears that threatened to suffocate me.  Pulmonary AVM's is what has become of Dyskeratosis Congenita for my son. It's the one thing you don't want when looking over the smorgasbord of symptom options; akin to a heaping bowl of horseradish.   It's the one thing, they can't fix.  It's the one thing that will take his life.

Here we are, a couple of weeks out from the official news.  Still,  shouldn't it be different than what it is?

He doesn't have cancer.  He doesn't have leukemia.  He doesn't have diabetes and he doesn't even have heart disease.  With any number of diseases diagnosed, comes a lesson, however brief it may be, in dealing with your new diseased life.  There comes a swag bag of pamphlets..."So you have cancer."  Something interesting to read, success stories, inspirational taglines and pink t-shirts proclaiming survivor-ship!  Never a shortage of chin-up adages to help you through the rest of your dreamy day as you stumble through trying to make sense of it all.

Instead, Pulmonary Arteriovenous Malformation has no specific colored ribbon to announce to the world what you're fighting.  There are no pamphlets on the doctor's wall.  No encouraging words.  No treatment options near or far.  No chin-up quotes, nothing interesting or inspiring to read.  Nothing.  Nothing comes with Arteriovenous Malformations.

No doctor that knows anything about it.  No support, no comforting words, no meals on wheels, no options, no education, no parting gifts, no rubber bracelets, no follow up appointments, no hope.

And that...feels different than I thought it would be.

So, here I am, not really sure what comes next.  Do we just wait?  What are we waiting for?  Waiting to die?  Is that what we do now...just wait to die?  Is there some kind of aspirin or something I should be giving him?  Shouldn't I be doing something?  I'm just suppose to sit here and wait and watch?  And wonder?  Wonder when that fateful day will come? Shouldn't someone be coaching us through this?  Shouldn't one doctor send us to another?  Someone with a plan?  There's always a plan when it comes to our health...but this is different.

 Different than I thought it would be.

What does it all mean?   In fact, my son asked me this very question just minutes after hearing the news himself.

What does it mean?

It means you live your life like you've never lived it before.  It means you don't wait to make a difference, or be inspired or to inspire.  It means you act now.  You love now.  You make the moments count.  You raise your heart rate to new heights! Let your breath be taken away by the beauty of tender mercies from God. Do things you've never done before. Take chances but more than anything, be grateful you lived. Be grateful everyday for one more breath as you breathe in life.

That's what it means...and it's different than I thought it would be.

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Thursday, March 19, 2015

A Little Too Much

Today, I'm dedicating this post to Shelbie. My sweet angel daughter!

This week, she is fighting both a bacterial pneumonia and a viral infection at the same time.  Because of the the other heart testing, she needs within one week, we have had to move forward with some really hard tests.

Today, she had her heart stress test, echocardiogram and an EKG.  She had run at a 14% incline at 3.5 mph!  She has a hard time catching her breath at best but it was even harder today.  I felt so sad as I watched her take on that challenge without complaining and I know she did her best.


When the tech and I waited out in the hall for her to change, the tech said, "She's awfully young to have these heart problems.  She was out of breath 5 seconds into it.  Does she have asthma?  Something is not right with her."

I just nodded in agreement because I knew if I opened my mouth, out with the words would tumble my tears.

When we left, we went to grab some lunch because she had to do this test fasting.  At lunch, she said, "Mom, I really don't want to cry because I am a big girl, but I am really tired and I'm  really scared.  I just want to feel better.  I want to be okay.  I'm afraid to close my eyes in case I never wake up."

I don't have any words but I have lots of hugs and I can share in her sorrow and her worry.  I love her so much!  I am so proud of her.

Sometimes...it just gets a little too much!


 

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Wednesday, March 18, 2015

Pneumonia and Neutropenia

Second time I've missed the signs of Pneumonia!! What is wrong with me?  I'm losing my edge.

Ahh...Shelbie started feeling bad Saturday night, Sunday a little worse but went to church and stuff.  Monday, worse still so I ran her down to the clinic.  Got some antibiotics for an infection and then felt pretty confident it would work and that would be the end of that.

Monday night, she was having a hard time breathing, her chest was really tight and a dry cough pursued her through the night.

Tuesday, she was really in pain and suffering so, by the evening,  I ran her back down, knowing that today we had a bunch of tests to get through. They did some x-rays and her lungs were crackly and infected!  Bleh!  They gave her a shot of Rocefin and hoped that combined, with the oral antibiotic, she would turn the corner.  I'm thinking we caught it pretty early.

The very strange thing is that she hasn't been running a fever at all.  Not even a low grade fever.  Nothing.  She has all the symptoms of a fever and being really sick but that's it and that is weird.  I asked the doctor how someone could be sick with a lung infection and not have a fever.

Well, clearly, when you don't have an immune system to speak of...it's not going to recognize that there is anything to fight off!  We are three weeks past IVIG which means she doesn't have any of that left in her system so we are just hanging out to pick up every little bug and bacteria that comes along.  Last night, we did breathing treatments and those seemed to help some.

Today, we had to go to the hospital in the city for some testing.  Some of the things, I had to cancel because of her breathing problems but she did go through with the Barium Swallow Study.  As soon as we walked in, I made her put on a mask, not just so she wouldn't pick anything up but for the courtesy of other people sitting there waiting.  No one likes someone hacking away beside them.

The radiology tech came out and said, "What's with the mask?"  First of all, that is so rude.  If you work in a hospital, shouldn't you already understand why people wear a mask?  Shelbie explained the situation and the woman said, "That's what I was afraid of, great!"  Seriously?  I was about to go postal!!  So fed up with cranky people.

People don't go to the hospital because they are looking for a party.  They are sick, worried, frustrated, scared...not typically enjoying their life right at that moment.  The least you could do, is try to be pleasant.

I couldn't go back with her but apparently, they started questioning the purpose for all the testing and tried to discount the doctor's reasoning and telling her that she should have had X,Y,Z test before this test...on and on...So unprofessional!

Mean, cranky medical professionals drive me insane when I am already on my last nerve and trying so very hard just to keep it together.


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Tuesday, March 17, 2015

Today Sucks!

Today is not my favorite day of all time!  It just sucks!  I don't have any particular reason for it to suck, it just does.

I hate how my mind ricochets between just fine to...holy cow, I'm a mess.

It's already been a rough morning.  Lots of endless tears and now I have an unbelievable headache.

 The more I learn about Pulmonary AVM's the more terrified I get and the more I can't believe a doctor hasn't addressed the future with me, really explained what this means.  I am convinced that when it's all said and done, Shelbie has it too.  I hope I'm wrong.  Maybe in the next few posts, I will have the strength to actually explain what is happening to Sam's lungs.

Shelbie is still not feeling well.  She has all the signs of a major infection except a fever.  She has chills, body aches, then super hot but no fever. Swollen glands, sore throat... She is having a pretty hard time breathing too.  I almost want to get her on the nebulizer but I don't have any medication for that and so help me, I will die if I have to walk into our clinic one more time.  They are starting to think I am making up stuff just to be there!  I am so embarrassed!  I don't really know how to deal with that.

There are so many things I wasn't expecting to deal with.  So many feelings I am shocked to be having.  So many other dynamics I didn't even know existed.  So many new experiences and I'm getting lost in them all, conflicted.

Today, along with all the other worries that slammed into me after a weekend of doing so great...comes the worry of my parents.  My dad was diagnosed on Friday with an aggressive form of cancer.  It's been really hard to hear that. I just always thought my parents would be healthy and be my parents.   It's been really hard to process the fact that they are going to have some really hard challenges coming up.

The kids and I are going to be with my parents for his surgery, my mom needs lots of support.  Hopefully, we can get all the remainder of our testing done and out of the way.

Ahhh...life is interesting.  Today sucks but tomorrow will be okay...at least I hope I will be back on track to help Shelbie through some difficult testing tomorrow.  



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Monday, March 16, 2015

Urology

Today was all sorts of fun at the urologist's office.

However, before we made our way down there, Shelbie woke up sick!  Infected eyes again, sore throat, a barky cough, swollen lymph nodes, the whole works.

I cleaned a house all morning, came home, raced Shelbie down to the clinic, raced back, picked up Sam, raced down to the city and well...you get the picture.  A very busy day!

Shelbie is on antibiotics and hopefully feels better soon.

The urologist was about how I thought it was going to be.  He is not a doctor who is into small talk in any way!  He wasn't even interested in hearing about Sam's health history.  I think he is just so use to seeing old guys with kidney stones because all the paperwork we filled out was just about past kidney stone history.

I had told Sam that there was no way he would need an 'awkward' exam.  Wrong!

The doctor said, "Mom, please leave the room." As he snapped the rubber glove now on his hand.  I looked over at Sam and watched the color drain from his face!  I died a million times for the poor boy!!

When that was over, the doctor said, "Well, this is worrisome.  No doubt about that.  It's unlikely he has passed a kidney stone.  So, we will see him back here in 6 months.  Thank you for coming."

And with that...we left.  Weird.

If I didn't have so many other things on my mind, I would have been miffed but the truth is, I have a pretty good idea already what is happening and I'm okay with waiting.

Tomorrow we have some x-rays to get out of the way then full speed ahead of testing the rest of the week and into next.

What I wouldn't give for a few hours of sleep...

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Saturday, March 14, 2015

Moments


I've been experiencing a series of moments.  Moments of pure joy as I watch Sam bound up the stairs to my office after school, proclaiming that he has decided what he is going to do with his life...raise Bullfrogs!   He learned in Aquascience class of a man who works 2 hours a day raising frogs and makes $100,000 a year.

Or...

That moment when I leave for work as he is coming home from being with friends at the park and he can't wait to tell me all about the new trick he learned slack-lining.

Or...

That moment when I see a picture that Shelbie has taken and it is the most stunning work of art.

Or...

That moment when I see her laugh without reserve, without a guarded thought...just an outburst of pure happiness and, when she calls her grandpa on her own to tell him she loves him and will be praying for him as he begins his battle with cancer.

Or...

That moment when my Elder writes home with excitement for the gospel that I have never seen before in my son and I know, without question, that the Gospel is part of him, all through him, inside and out.  It amazes me!

Or...

That moment when my Elder says the exact words that I really needed to hear that week.  He may be hundreds of miles from me, but as my friend said once, he is the same distance from God, the God who inspires him to bless my life even still.

It's in those moments that I can't believe that these young adults are my children!  They have done so much good in their lives.  They have been able to rise above their challenges, righted some wrongs and become the most incredible human spirits.

Then there are moments when I realize that all I will have left are these moments.  Moments like this are sad.  Really sad...and I'm not sure how people who have children with terminal illness live every day.  I don't know how they go on.  I don't know how you live in the moment and not let your mind imagine life without the three people who have made your life worthwhile.

That is something I have yet to figure out.  Maybe I'll never get it figured out...maybe you just keep living those questions and somehow, the answers work their way into each day of wondering.

Tonight, Shelbie and I went to a talent show.  Let's just say, it wasn't that entertaining but for $3, it was something to do.  There was however, one guy all dressed in dreadlocks and saggy pants who danced.  He was amazing and made it into the finals.  His final dance was to the song Immortal by Evanesence.  It was the most emotional performance.

The words to the chorus are these:
       When you cried I'd wipe away all of your tears
      When you'd scream I'd fight away all of your fears
      And I held your hand through all of these years
      But you still have all of me

From my teary eyes, I could see that Shelbie was crying too.  At some point, in the not so distant future, we will need to confront our unspoken fears and worry about what the future is going to hold for us. For now, we cry quietly, hoping we don't see each other's wounded heart.  This moment is yet to come.  Until then, and even after then, we will just have to muddle through, moment after moment, whatever that moment is going to bring. 
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Friday, March 13, 2015

Family History Part 2

My Grandma P passed away 3 years ago.  I have her picture right in front of my computer so I see her beautiful face every day.

I asked her the same questions I asked my other grandma and here are her answers.

What did you imagine your adult life would be like?

  • "I always thought that if I lived to be 50 years old, I would be an old woman.  You know, I received a letter from 'a little old woman', she was 50 years old.  When I turned 50, I thought, 'I'm a little old lady now!'.   I always thought I would have a little boy and grandpa wanted a boy so badly he would babysit his sister's little boy.  All we had were girls but then, at last, Grandpa got his little boy and he was so happy."
What has been your favorite tradition?
  • "Singing to my grandchildren."   I would have to agree!  I loved it when my grandma babysat us and she would always sing. 
What was your greatest accomplishment as a mother?
  • "Sewing, Candy making, Crocheting...all skills I learned from my mother.  Other people would try to make my mother's recipes but no one could ever recreate them.  I think being in Relief Society was a great accomplishment too.  I served as a secretary for 11 years, a counselor for 7 years in the Stake and Stake Relief Society President and met with Sister Spafford many times.  At age 81, I finished my personal history.  That was quite an accomplishment!"
What advice would you give your posterity?
  • " I would want them to know and love each other.  You have to do things to make each other happy and forget about the sad things.  You can't handle the big things that come all alone, you have to rely on each other and be there for each other.  That means you have to go out of your way to love each other."
What did you love most about Grandpa?
  • "I loved that he wanted to do good and he did mostly good things in his life.  He did get his temper up at times but he tried not to.  One time, he bawled me out to a fare thee well!"  (She said this part through fits of laughter, with tears of joy streaming down her face.  She laughed no matter what was happening...even getting bawled out to a fare thee well! ha ha...)
What was your happiest moment?
  • "All of my life I was happy.   I was happy when I was called upon to serve. I made temple clothes for 22 years!  I was happy."
Was there ever a time when you felt scared and had to rely on the Spirit?
  • " I was sometimes scared tending my grandchildren.  I had to rely on the spirit many times."  I tried to get her to elaborate on this but she said, "Just leave it at that."  So I did. 
What do you miss most about Grandpa?
  • "Ohhhh, I miss his company!  Tom always worried about leaving me alone."
My grandma's motto was..."You do what you have to do when you have to do it and you don't complain."

I am so blessed and grateful to have the posterity that I do!  What great examples each of them have been, including my parents.  They say that you can find a bit of each ancestor in you look clear back 4-5 generations!  That's amazing and if you really think about it...I believe that is true.  

I remember a few years ago, my mom pulled out a box of fabric flowers my grandma use to make.  I had no idea that she made flowers.  They were beautiful.  The strange thing was...I had picked up making fabric flowers that looked an awful lot like my grandmas! 


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Wednesday, March 11, 2015

Family History

I have only slept for about 6 hours since Monday.  I'm kind of tired but I've also got this weird energy going on and I've been cleaning out my filing cabinets.  I figure, when I die, no one is going to want to sort out stuff that is decades old.

While I was sorting, I came across my folder when I was all over family history!  In that file were interviews I gave my grandmas.  Both grandmas.  I wanted to record the questions I asked and their answers here so I have them forever! ;)

My Grandma F...she is still alive!  Close to 100 years old and this interview was done nearly 10 years ago.  Never in a million years would I have thought my grandma would have lived this long but she is not yet done her purpose here on earth.

What did you imagine your adult life would be like?

  • "I always wanted to be a beauty parlor lady.  I never pictured myself as anything else.  I always knew I would do that.   I also knew I would be involved in music."  My grandma did both of those things!  Oh, how I wish I had inherited one ounce of her passion.  It's a gift I believe, to know what you want to do and then do it. 
What is your favorite tradition? 
  • "My favorite tradition was dancing and singing with your dad as a bedtime ritual.  I felt like a real mother when I did that.  I also loved teaching your dad about the gospel and how to pray."
What was the greatest accomplishment you have made as a mother?
  • "Everything.  Everything I did was something my mother did for me."
What advice would you give your posterity?
  • "Work hard.  Be obedient. Be honest. Do what the Lord wants you to do, not what you want to do for yourself. Stay with the church.  There is nothing out in the world but evil and that will not help you." 
What did you love most about Grandpa?
  • "He was a very, very kind man and never got mad.  He taught me many good lessons about the plan the Lord had for us."
What was your most unhappy time?
  • "I am sad that I had to work so much to help provide for the family but work also helped me find myself after my son died.  The death of my son Ronnie has been my life long sorrow."
What was your happiest moment?
  • "My happiest time was when your dad was born.  He was such a pretty baby with the finest features.  I miss my life with Duane.  When I look back, I can see that Grandpa was a real friend to your dad and I took a back seat to them.  I loved to clean, more than I loved to cook.  Finally, later in life, it was such a joy to serve a mission with Grandpa."
Tell me some things about Grandpa I probably don't know.
  • "Grandpa's father was never active in the church, he grew up where there wasn't a church.   Grandpa set an example for his family.  He was always the first to be ready for church and the first to see that they went to church."
I didn't realize at the time, that this would be so important to me.  My grandma is not in good health and I'm sure she won't be alive much longer.  As I typed this, I could hear her voice and see her smile and the way she would tilt her head when she spoke of happy things or spiritual things. Her heart was always full of good things and it showed in her entire body language.  Boy, I will miss her when she is gone. 




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Tuesday, March 10, 2015

Cardiology updates

Today, we had our cardiology appointments for both Shelbie and Sam.

As we drove down to the city, the kids were laughing, joking and seemed to be doing well.

Me...on the other hand was trying to keep up with my racing heart.  I think my heart actually made it to the clinic before I did...It was running fast!

I'm not sure why either...I pretty much knew what our two options were going to be and I have had weeks to mull it all over.

Starting with Sam, he has Pulmonary Arteriovenous  Malformation or, as I will now refer to it...Pulmonary AVM.  Basically, he has multiple holes in both lungs.   These 'lesions' are causing the increased pressure in his lungs and causing oxygenated blood to shunt into the wrong side of his heart. This is increasing the pressure in the right chamber of Sam's heart.

Unfortunately, there is no known cure for this disease and no treatment.  It is a progressive disease but it's anybody's guess how slow or fast it will progress.  I wasn't aware that it is a disease not just for the lungs.  It can attack the liver as well.  As far as we know, Sam's liver is okay but we will follow up with our Gastrointerologist for further evaluation.

Shelbie's is not so easy...not that Sam's is easy but now we know.  As he looked at Shelbie's echo study and EKG, He said, "Ahhh, the plot thickens!"

Yes it does!

Shelbie was confirmed to have a hole but he doesn't think this is responsible for her shortness of breath or chest pain.  He isn't entertaining the idea of fixing the hole.  At first I was flabbergasted!  If there's a hole, why not fix it?

Then, he reminded me that her bleeding disorder ITP would create a risky situation for surgery.  It would not be an easy surgery but involve a titanium piece that fits into the heart.  Given her other complicated health issues, it's just risky.  He and the medical studies recommend waiting until the first 'event' to fix it.  He believes that the fix is going to be more difficult and more dangerous than to leave it for awhile.

You can imagine how hard it was for Shelbie to hear this!  Wait until your first 'event'??  That's sort of like, waiting for the other shoe to drop...only worse...waiting for you heart to drop!  Not fun.  Crappy really!

She has the valve problems, as does Sam but he wants to wait a little longer on that and just watch them closely.

In the meantime, he wants to do several more tests on Shelbie like a stress test, a swallow study, more imaging...blah, blah, blah...basically, we will be hopping over the next few days and weeks.  The nurse gave me a full 8x11 sheet of paper with all my instructions on it for calling who, when to get it all scheduled.

We still have the pulmonology appointment for her coming up and at that time, we will probably start the process for testing her for Pulmonary AVM's.  As I took a little more time tonight to investigate our new diagnosis,  I read that AVM's can show up on a CT scan to look like nodules and calcifications!  Ugh...the image they showed even looked just like the image on Shelbie's lungs.

I'm a little anxious.
I'm a little sad.

Okay...really...a lot sad.   And I'm tired.  A lot tired.

Both the kids came unraveled as we left the clinic.  When Shelbie was taken away for a test, Sam said, "MOM!! This sounds serious!  What does this mean?  It's worse than just a hole in my heart!  They said I have holes in my lungs!!"

What do you say to that?  What?

Well, I said, "Sam.  What it means is that you carry on living your life the way you've always lived your life!  Get out there and do something great!  Make a difference.  Inspire yourself, inspire someone else.  Get busy doing good things with your life.  That's what it means!"

For now...that's all it means.   Now, we just have to believe it enough to do it.



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Saturday, March 7, 2015

Tomorrow

I'd like to tell you
that things will
 get better tomorrow

But...I've been through
so many tomorrows
and nothing has changed.

K.S.

I read this poem many, many months ago and tonight, seemed like a good night to share it.

I keep telling myself tomorrow will be better.

I keep telling myself that there is going to be an end very soon to all this chaos we have been dealing with; that resolve is just around the next corner and like the summer afternoons spent with my grandpa walking to the corner store for a penny candy treat, I can see it.  I can see the next corner and I am sprinting towards it, wanting so desperately to turn it so that I can run right into the face of 'normal'.  Oh how wonderful that word rolls off my tongue...to be normal. What is that like? To live each day without the lonely looming thoughts that loop subliminally through your head.  Still, I walk through my day, watching people pass by, rushing to strike another thing from the 'To Do' list or have money to spend on whatever, like they have no cares and I wonder how they do that!  I suppose to them, I'm doing the same thing but I'm not, just pretending I'm not totally lost in my own head and worries.

But then...

I was struck with the fact that maybe, there is no corner to turn.  I keep approaching my life from an arm's length away, wishing away the moments when I can feel something different. Each thing that happens to me feels like a project of sorts, something I really don't want to do but I'll do it because at best it will only last an hour or so and then it will be done and I can do something more exciting, something I'm passionate about...if I had a passion that is.

What if this is not just some random projects that come and go with a definite beginning and a flimsy ribbon ending we come rushing upon?

What if this is what it is...This is it?
Life.
My life...not an event I paid to watch but have been thrown in to live? One moment, one trial, melding into the next to create this rich life and abundance of feelings that ebb and then rush into our hearts, even overwhelming the most sinewy muscle that is meant to stretch and beat to the rhythm of life?

I've been better this week at embracing what is rather than wishfully thinking it away.  I have been better at being engaged in the process mentally and spiritually.  I try to see the purpose in the suffering, the sadness but more importantly, I am trying to see how God is leading us along this greater path of goodness.

Friday, came another new health development for the kids and perhaps myself.  One that could have a significant impact on our lives again!  One that reminded me that this adventure is far from over and maybe instead of treating this like it's my life and that's all there is to report for now...I need to consider that it is not the only thing my life is made up of.   It's just part of it, a big part and a sad part but not the only part.   I have been reminded that things are not going to settle down tomorrow, or after the heart surgery, or when someone's white count inches ever so closer into the normal range or even some distant date on the calendar when I think we are done with doctors.

Things may never settle down, this may just be it, so, it's time to jump into my life.  Live my story and claim it as my own with all its nonsense, chaos, imperfection and joy.

Tomorrow will come, and then another tomorrow right after that and odds are, I'll still be here feeling a myriad of emotion and life for us, will never be dull or uneventful.  That's one tomorrow, I can count on.
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Friday, March 6, 2015

At 5:15

If it doesn't make you crazy first...our minds are really amazing and beautiful.

Our minds can absorb so much and either terrify us to death with the catastrophic places it can take us, or create scenarios of beauty and peace and often out of really bad situations we find ourselves in.  It's pretty amazing if you think about it...with your mind.


Yesterday, was sort of a laid back, get work done kind of day.

I realized at about 5:15 that I hadn't had one terrifying thought all day.


  • At 5:15, I realized that I forgot my kids were sick.
  • At 5:15, I realized that I was sitting at a stop light ...c.o.n.t.e.n.t.
  • At 5:15, I realized that I was breathing, just normal, deep breaths not the shallow panting that keeps my shoulders wrapped around my ears.
  • At 5:15, I looked over at Shelbie and we seemed normal!
  • At 5:15, I realized that Sam has been sneaking off to gym class twice a week...and I let him!


At 5:16...panic struck.


  • At 5:16, I realized that Shelbie's lungs are filled with damage that we probably won't be able to                                  reverse and she will forever be short of breath!
  • At 5:16, I realized that 5:15 doesn't happen very often lately.
  • At 5:16, I realized that I am so exhausted and I can't do one more month like the one we've had
  • At 5:16, I realized that my reality is like no one else's I know.
  • At 5:16, I realized that on Tuesday, I may be preparing two kids for heart surgery.
  • At 5:16, I realized that on Tuesday, I may be preparing Sam to accept that his heart isn't going to get better.
  • At 5:16, I wanted to cry...right there at the stop light... just one minute after 5:15.
  • At 5:16, I realized that this might closely resemble crazy, I mean real crazy.  I mean white jackets with extra long sleeves and silver buckles crazy! 
At 5:17...I realized that I'm doing the best I can and if I can have one minute of feeling pretty good than I guess that means I'm not totally crazy!   Right?


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Wednesday, March 4, 2015

Today's Appointment

The appointment I was dreading actually ended up being positive, as far as the interaction and communication goes.  It was much better than our last appointment when we found out the boys have Dyskeratosis Congenita.

Basically, I just wanted to make sure that the large lymph nodes showing up everywhere weren't the beginning of lymphoma.  He doesn't feel like they are.

Clearly, her body is reacting to a systemic infection of some sort.  She has battled Adenovirus for many years now and because her marrow struggles and she has a chronically low white count and neutrophils, she just can't kick it.  He thinks this is likely the problem. He also thinks this virus could be responsible for the nodules and scarring in her lungs but he wants the pulmonologist to weigh in on that theory.

So, what do we do?  Well, there aren't many options since it's viral.  All we can basically do is continue with plasma transfusions.  For now, the treatments aren't making her feel better but they are keeping her stable.  Stable is better than the alternative.

Shelbie asked what would happen if she went off the IVIG and without a doubt, she would crash hard and fast.  We just have to keep praying that IVIG is enough to maintain her immune system because we would not have many more options should that fail to keep working.  There are already signs that it isn't covering everything.  This is manifested in the fact that she got that crazy eye infection and inflammation two weeks ago.  It is such a rare thing.

We talked about the heart issues and he agreed that we can't really call this congenital or just some anomaly. There is an underlying issue that is common in both kids...all three really.  Again, we come back to the whole Dyskeratosis Congenita theme.  It really is becoming more evident that Shelbie is getting more and more symptoms and the only way to justify this is the Lyonization theory.

Lyonization is where the good X chromosome and the mutated X chromosome she got from me are picking and choosing which  one will function in which cells.  So, that is how she has so many symptoms of the disease yet not exactly the disease.

We also had a long conversation about her bone marrow function and it was decided that we will do a bone marrow biopsy in August on Shelbie because clearly, things are changing for her.

There was easily another hour of information but it gets confusing and I don't feel like doing all that typing...

All in all...I feel relieved that we are back on track.

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Tuesday, March 3, 2015

Things are about to get hairy

Well, well, well...

Two kids.

Two hearts.

Two holes.

Four malfunctioning valves.

Two sets of bad lungs

Congenital they say.  Just a fluke thing...they say.

Bologna...I say!

I can't officially say I have three kids with heart and lung problems but without a doubt, I know Spencer has heart and lung problems.  We started cardiac testing just before he left and they found abnormalities but we just ran out of time to finish testing.  I bundled that big heart of his back up and handed it over to God to take care of and He has!!  Spencer hasn't passed out like he use to, had uncontrollable asthma attacks...nothing, at least that he has told me about!  He has done so well! For that reason, I wish he could serve a 10 year mission...except I could really use a big hug from that boy of mine!

I picked up the official report on Shelbie's bubble echo study today.  Positive for an Atrial Septal Defect.  Additionally, her tricuspid valve is not working properly and blood is shunting back through it and the valve where the pulmonary artery meets the heart is not functioning properly either.

Call it anything you want but it is not a fluke.  There has to be one common denominator that has caused my kids' hearts to be so messed up.

We will see our cardiologist next Tuesday and at that time, we will get Sam's tests from Salt Lake back as well and know if he too will be signing up for surgery or if his situation is just going to run it's ugly course.

This afternoon, I had to take Shelbie in to our family doc for some new problems that have cropped up and they are going to try to get some of these distant appointments moved up; like Pulmonology and Urology.  They aren't too keen on waiting a whole month for these issues to be addressed.

Tomorrow, we tackle Oncology.  Just praying that goes well.

Already, I'm trying to plan heart surgery for two kids.  Ideally, I would like to wait until pulmonology decides if they are going to do a lung biopsy on the mass and nodules that are growing in Shelbie so we can do it all at once.  Then, wouldn't it be sweet if they could do one kid right after the other and then bunk them in a semi private room so I can just park myself between their beds and take care of them both at the same time?  I think that would be way better than doing one kid one week and the other kid the next week.  I can't imagine anything worse than watching your sibling go through something like this, knowing that you are next!

Ugh...I know it's going to be okay.  I just want to move on from being stuck here and get some plans in place.  A plan is better than any degree of unknown...or so it goes in my head.

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Sunday, March 1, 2015

The weekly re-cap

It was a big week and we survived!  Barely but we survived.

Wednesday was Shelbie's testing which I already reported on.  Thursday was IVIG which went off without a hitch and Thursday night, after I was done working, we headed to Salt Lake for Sam's cardiac testing.

The drive down was tiring as it was kind of late and sitting at a hospital all day is the most fatiguing thing you can possibly do.  I don't know what it is about hospitals but they make me tired.   The kids slept off and on and in the darkness of the night sky, it was hard at times to stay in the moment.  Anxiety continued in waves and it was hard.   I wondered if I would ever know how it feels to live carefree and without my companion of anxiety and worry.  No matter how hard I try, it always comes back to this sooner or later.

At 10:00, we decided to stop for dinner.  The kids wanted me to try In n Out. I've never been there so we decided to be adventurous.  I couldn't believe the line up for hamburgers at 10:00 at night!   They were pretty good burgers.  I didn't eat much because I was not feeling well.  Kind of sick to my stomach actually but the kids enjoyed every bite.



It was late by the time we got to our hotel.  Sam's tests were actually not right at the U of U but at a campus south of the city so it took a little longer than usual to get to.   We checked in and the hotel was filthy!  Disgusting!  I was so bugged but I was so tired so I didn't complain.  The pillows were dirty, the sheets were dirty.  There was fast food garbage on the floor along with beer bottle caps.  The bathtub was stained and there was only one towel!  ONE TOWEL!   The kids brought their own pillows so that made me feel better.   I slept in my coat with the hood pulled up on my head and wrapped up in a blanket that I had taken to the hospital earlier that day.

The next morning...no hot water!  Grrrr.
Then...I set up Maps on my phone with the address to the hospital and we left 35 minutes before our check in time.  Turns out, the nurse...the one who didn't bother calling me back for two weeks, had given me the wrong address and we ended up in some industrial part of town by the railroad tracks!

After a little recalculating and finding the correct address, we made it to the hospital with just a couple of minutes to spare!  Turns out, it was about 1/2 mile from our hotel!  Sheesh!

After a crazy 12 hours, I couldn't believe we were here, finally getting the test that was suppose to happen over 6 weeks ago!  I was tense and nervous and that was aggravated by the fact that they wouldn't let me stay with Sam.  So, we said goodbye in the hall.


2 hours is the time he had to spend in the MRI machine!  It was not an open MRI either.  Shelbie and I sat at the end of the hall counting the minutes.  I did get a chance to talk to my friend in California whose son has been really sick so it was a good distraction from worrying about how Sam was doing.

He said he did okay but he sure looked tired when it wall all said and done.

We had a late lunch and then tried to squeeze in something fun to distract us even more!

We have always wanted to find my great, great, great, great grandfather's grave so we went to the cemetery in Salt Lake where many of the prophets and apostles are buried.  It took almost an hour to find his grave but we did it!



I was glad to see he was in a nice part of the cemetery and he had a gold plaque showing that he crossed the plains with the other pioneers.

We also visited the graves of  President David O Mckay, President Spencer W. Kimball and President Gordon B Hinkley.  We saw the grave of the man who built most of the handcarts, cradles and coffins for the pioneers.  There were many more that we saw and many that made us wonder what their life was like.

It doesn't seem like a fun activity but my kids really enjoyed it.  So did I.   There's a lot of history in a cemetery if you think about it.  It felt nice to connect with family too!

Shelbie ended up getting sick with something strange...GI related so she had a tough night back in the rat trap of our hotel.  Saturday, I debated just heading straight home but she insisted that if we could get some Gatorade, Pepto Bismol and other medications, she would be able to do the activities we had planned.

We were going to go to a wave pool in the area but since she was so weak, we decided to change plans and go to the aquarium.  I had to rent a wheelchair for Shelbie and though I hate doing that...it helps so much!!  She was able to sort of enjoy the exhibits and Sam didn't mind pushing her around.
The jelly fish exhibit was amazing!   I would have to say, this is one of the best aquariums I have been too!


That was the extent of our trip.  Pretty uneventful for the most part.  I wish the kids had of been feeling better so we could have a little more fun.  We never just take a vacation.  The only 'vacations' we get are when we leave town for medical appointments.  Those are never really that fun but we do the best we can.  


Not much is planned this week.  Test results start rolling in on March 10th so we have some time to panic, wait, think of the worst possible scenario, create catastrophic thinking rituals...you know...that kind of thing.  Nothing like a good wait to really make a person crazy!

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