Wednesday, August 23, 2017

Heart Surgery

Life is funny...you have two weeks to prepare for the reality that your son will likely be having heart surgery and for two weeks, you imagine what that could be like.  You mull it over, roll it around in your mind and you almost get use to the idea.  You try it on, imagine yourself on that day, in your mind they wheel him away, down the sterile hall, through the automatic doors and there are sounds that only echo in the back halls of a hospital.  And ...it's okay.  'It's going to be okay', you tell yourself.

But then...you hear the doctor say, "Sam.  We need to fix your heart and I think we need to do that with a pacemaker."

And then, it sounds like he is speaking anything but English.  You look at the doctor and his lips are moving in slow motion and then you glance at your Son and without the wall behind his chair, I imagine he would be free falling in that moment.  You notice his flushed face, the way his eyes just sunk into his cheeks and you know that he isn't even in that moment either...he's somewhere else at a safe distance to take this all in...slowly.  Little by little. You look back at the doctor and wonder why he can't see that he is talking to a 19 year old boy.  He looks so healthy.  He is suppose to be so healthy.  All 19 year old boys are healthy.  He should be on a mission.  His friends are on missions.  He should be anywhere but sitting in this terribly laid out room, hearing that he has to have surgery to fix his heart.

Everything is moving fast but going nowhere.

I have to plan how this is going to happen but first...I need to buy him some underwear!

Underwear?  Yes.  Because, I remembered three years ago when we first found out about the AVM's around his heart, the pressure building in the left ventricle, the pressure in his lungs, the hole in his heart...He had been nagging me about the fact he needed new underwear and I kept putting it off because I literally didn't have enough money to buy him new underwear.  But that day, I took him to buy new underwear.  He told me he wouldn't need it, he was dying.  I told him he did need new underwear...life was not going to end for him that day and to prove it, I bought him new underwear.   For some reason, in that distant moment, new underwear was a sign to him that life would go on.

I don't know why my mind went there.  Sometimes, I think I just can't handle what is being said and I escape into pointless places to rest from the ensuing trauma.

All of that from 3 years ago has progressed.  The results of his Holter Monitor showed mostly heart rates in the low to mid 30's, some low 40's but nothing higher.  The doctor confirmed that he does have a right bundle branch blockage which means the right ventricle is not receiving electrical stimulation.  This is different from the sinus bradycardia but hopefully, the pacemaker will take care of that problem which is farther down in the heart.  He also has abnormalities in his T-wave which is much more pronounced from 9 months ago and a mild left ventricle hypertrophy.

I was so impressed and relieved that our doctor took quite a bit of time to do some research into Dyskeratosis Congenita.  Nowhere in the literature, is there associated heart problems with DC but he said that Sam's heart is just old.  He sees similar things with his very elderly patients.  Since DC is a telomere disease with short telomeres that cause organ damage and failure, he seems to think these heart issues are attributed to DC.  We can't say for sure but it seems suspect.

The pacemaker is only a band-aid.  It's not going to fix all of Sam's problems but it might allow him to keep doing the things he loves.

I realize that as far as heart surgery goes, it's not as life threatening as open heart surgery.  Sam has a 5% chance of some serious complications and infections.  There is a small concern about the condition of Sam's lungs in doing this surgery but  they are aware of those complications, the AVM's and his very poor immune system so they will be watching him closely.  He will be in the hospital for just two days.   The surgery itself will take 2-3 hours and he will be awake for the duration.  That totally sucks!!!  I will never, as long as I live understand why people have to be awake for this kind of thing.  I don't understand it and I have yet to find anyone to give me a reason with more substance other than...insurance won't pay for anesthesia.  &*$^ insurance!  I'm so sick to death of health insurance in this country.

Before I say something I'll regret...or won't...

I guess my anxiety and worry tonight isn't so much about the procedure.  It's about the fact that this disease is taking so much from us.  Everyday, our story changes.  Everyday, what we expected yesterday is completely different and we are constantly regrouping...trying to find stable ground...something normal. Everyday, something else sets us back.  WE never get a break.  We never just get to be still.  I don't want to be angry and rarely do I feel this way but tonight, I'm just angry.  I'm lonely.  I'm sad.  I'm angry.

Sam's pretty upset but won't talk about it.  We got home and while I got busy making dinner, he went up to his room.  When I went up to check on him an hour or so later, he had drawn the most incredible mural on his wall! I couldn't even believe my eyes!  I had no idea that my son was an artist!  He had at his feet, a sketchbook with drawings in it.  He was taking one of his sketches and redrawing it life size on his bedroom wall!  Way to channel his emotions!  I was so proud of him in that moment.  My kids amaze in ways I can't describe.

I know we will be okay...just not today and maybe not tomorrow.

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Monday, August 21, 2017

Totality

I had high hopes for this weekend.  We live right in the path of totality for the solar eclipse.  I'm lucky enough to have seen a total solar eclipse once before when I lived in Canada.

For months, this event has been talked about, rumored about, exaggerated about...there were big expectations, not only for how amazing the event itself would be but the number of people that were projected to stay in our little town for the weekend.  Up until this morning, it was like throwing a party and no one showing up.  I kind of felt sad and disappointed.

But...this morning, all that changed!  This town was crammed and it was so cool!  I loved it!  I loved the energy which sounds super weird coming from an introverted recluse who hates crowds, spontaneity and basically living large!!  Just kidding...I actually sometimes really love all that!  I was so excited in fact, I couldn't sleep last night!  Just kidding again...there were other reasons I couldn't sleep!

Anyways...while I wasn't sleeping, I decided that I missed the days when I was a fun mom.  The cool mom.  The mom all my kids' friends wished they had.  I'm not that mom anymore, at least this past year.  Even on Sunday night, we struggled together.  It was just an all round, hard, really hard and crummy day.  We were up til nearly 2 am trying to get through some hard talks about what's coming next.  So...as I laid there crying, when it was all said and done, I knew I had to rescue our life and bring back the life we use to enjoy!

I got up really early and ran to the grocery store for some fun food!  Cosmic Food!!! Eclipse eating food!!

Spencer was the only one up when I got home so we went for a walk down to the airport and watched so many planes fly in!  That was amazing in itself.  Our little airport was wing to wing with airplanes. 

For breakfast, I made double chocolate chip Totality pancakes!!  I made the whole works, sausage, eggs...Yum!


After breakfast we headed out an upstairs window and climbed onto the garage roof and then the very top roof of the house.  What I wanted to see as much as the eclipse, was the  360
  degree sunset!  To do that, we had to be above the trees.

 This was an early view through my eclipse glasses on my phone...not much to look at.

 Here we are on the roof...two of the kids' friends from the YSA ward came over for our party.  We threw cosmic brownies off the roof to our little neighbor friends below!  It was fun up there!

Sam


Have you ever noticed that cameras don't do your eyes justice.  This was as the shadows were getting long and the sun was disappearing. 


A little darker still...

 The sunset at 11:30 in the morning was stunning!  I had such a moving experience but nothing compared to totality!  At that moment when the moon filled the sun, silver blades of  the brightest light exploded from behind the most beautiful moon! Two of God's most intentional creations of light, together and the world fell still!!

Our little world was completely still and nothing could be spoken but an unheard awe of wonder that God is in His Heavens!  And then, just as suddenly, the streets erupted with cheers of exclamation and we were filled with emotion!  All of us!  And it's the coolest thing in the world to hear your children speak of the strongest spirit of holiness they have ever witnessed, come upon them.

It was such a Heavenly and holy experience!  One I hope I will never forget.


I wish it could have lasted longer.  It was too fast and too beautiful.

As we sat there, completely drained of energy, in a sense...we each reflected on what the experience meant to us.

I have such a hard time with the violence and anger that has exploded in this country over the past few months.  I have a hard time with the anger and frustrations that I feel personally with some relationships I have in my life right now.  I hate the agendas, the angst, the selfishness, the confusion, the difficulties, the strain, the insecurities, the loneliness, the....on and on.  Some of it I can fix but some of it I can't and that's a hard thing for me to live with.

Life isn't as simple as it once was.  We have a hard time fitting in to each other's world and that makes me so sad.  Part of the conversation I had with the kids at midnight on Sunday, was how we all feel alone and misunderstood.  One by one they described how they feel like an island, so distant from love and belonging. Don't we all feel like that?  And that makes me sad.  We need to be more loving.  Now more than ever, we need to share more light with one another, be gentle, kind and loving no matter how much the darkness tries to choke the light.  This weekend, I tried to show more caring and even though it may not have been seen in the loving light it was offered...it feels good to do so.

It felt good to walk through our town sharing in this happy moment and maybe for one small moment, good things came from the juxtaposition of light and dark that Heaven displayed today!
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Saturday, August 19, 2017

Heart updates and such

It's been a pretty tough week around here.  Personally, I've had some issues myself to deal with that are a little disconcerting.  Not feeling well for such a long time prompted me to find a doctor who would actually listen to me.  That led to a series of tests in the hospital.

I'm pretty sneaky when it comes to stuff like this.  The kids get a little anxious if they know I have to have tests and stuff so I try to not let them know.  The big concern has been my kidney.  It's had a growth in it that we've been watching for awhile but lately, every day I feel like I have the start of a kidney stone and the more I drink to stay hydrated, the worse I feel.  No final word on that, I will find out on Wednesday of the coming week.  Yesterday and today have been miserable in the pain department so I hope it's something that is nothing...or can be fixed easily.  Today, I had to spend a little more time having tests done and those results will also be back Wednesday when I see my doctor.   It's no fun.  I'm sure it will all be okay in the end but I love all this time I have to worry and fret.  Such a great past time.

The real kicker came tonight when I got Sam's cardiac testing results.  I'm really scared that maybe they won't be able to Pace him.  (That's the term used for people who get a pacemaker...I guess. A little Cardiac slang cause I'm cool like that.) I guess since I'm not an electrophysiologist, I will sit tight and let them decide on Wednesday.

The report said the following abnormalities were present:

He has a Right Bundle Branch Block- the right ventricle in his heart is not activated by the electrical system and impulses.  The left ventricle hypertrophy which means the muscle wall is getting abnormally thick.  This is the kind of thing that causes sudden death.  I have no idea what this means for Sam as far as treatment options but I know it doesn't carry a good prognosis.

Even still...I am going to choose to believe that we are finding out about this so that something can be done to preserve his life.  I'm still really scared and anxious about this but in reality, this could be a gift.  There are many people who die from sudden cardiac death and didn't know they had a problem.  They had no chance to fix it and no warning that they were sick.  We know.  Sam has symptoms of this and we have a chance to fix it.  That's a pretty big and generous blessing in a way...one of those good gifts that looks like it could be something other, if you don't look carefully.

So often in life, we dismiss something hastily, thinking it's not what we wanted, or prayed for and not a blessing at all but really, if we weren't so quick to put our own meaning on it, we would see the wonders of God written all over it.  Sam is my wonder...he will be okay.  This is not how his story is going to end.

The challenge this weekend will be to stay busy and far from needless worry.

On Monday, we will experience Totality! A total solar eclipse and our little town is at the heart of this event.  It will be a good distraction for us all.  We plan to climb up on the roof with our Doritos and Diet Coke, and chill with our awesome eclipse glasses and pretend that it's the biggest thing in our life.

Some people will never witness a total solar eclipse.  I will be lucky enough to see two!  I was in 4th grade when I saw the last one.  I have the best luck...wouldn't you say?  (Don't answer that...)


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Tuesday, August 15, 2017

An Unlikely Gift

I've been thinking about gifts lately.  I haven't talked at all about this, but I started my annual 29 Gifts project earlier this month.  I'm a little late.  29 Gifts project is usually reserved for the month of January but when January came, I didn't have it in me to even think about anything productive.  I thought I would tackle it in February.

February came and gave way to March...and now it's August.

And while I haven't been documenting my projects as I have in the past, I've been busy giving.  I've been busy receiving too cause that is what happens when you give; you get ten-fold back.  I had a little help from a friend for a few of the days, some of the bigger things.  We made care packages for the Huntsman Cancer Center, Madison.  Last week, I delivered a ton of school supplies to The Haven in the city; a homeless shelter for women and children.  There have been smaller gifts but still significant to me, in between.

Tonight, on my way home from the gym, the sky was a moody mix of deep, vibrant colors and shades of grey and the clouds billowed and bulged and behind it all, the sun was settling down for the night.  I felt both lonely and content.  I don't understand how that happens so much.

We've covered some emotional ground the past few days.  Bad news, birthdays and everything in between.  Nothing has changed but everything feels different and distant yet we remain standing where we were just a few days ago when it all felt so impossible.  Maybe I'm noticing things I hadn't before...gifts.

It was a gift that my sister could spend a whole week with us.  We did nothing fun because I had to work so much but just having her here was awesome.  I don't realize how lonely I am until there's someone around to talk to.  My kids love their Aunts and Uncles so much!  You would think they were their best friends when they finally get to spend a little time with them.

On Sunday, my brother texted me a beautiful message.  I rarely talk to my brother.  Not because we are fighting or anything, just because we let life get in our way.  I was so surprised by his words that I texted him back..."Are you feeling okay?"  Ha ha. I love him so much and I wish I could see him more often.  He is a gift and he even called Shelbie to see how she was doing.

Sam is managing life incredibly well.  He has this little disorder called Dyscalculia.  It's a learning disability and his brain processes in ways that few people experience.  He is one of the most perceptive people I know.  When I need to remember how something fits together or the fine details, I just have to show Sam and in seconds, he's got it!  He doesn't however process time passing or remember things, especially things like the details of his health.  This has proven to be an odd gift this week as he is able to shift from being completely terrified and overwhelmed to finding his old groove and moving ahead like nothing major is about to rock his world.   He is happy and he is working as if nothing happened last week.  

Spencer is moving to Utah in a couple of weeks.  That's not a gift!! But, in thinking about how much I don't want him to leave I remember what a gift it has been to have him at home for the past year.   He brings so much to our family.  He can be the voice of reason for Shelbie and friend for Sam.  He is my temple buddy and goes the extra mile helping me with whatever.  He is thoughtful and kind and doesn't let life slow him down.  He has spent the last year learning so much with videography and doors are opening up for him.  His learning is paying off.

Last week, I mentioned about the man I met at the Corn Dog truck.  It was an opportunity I wasn't expecting and really, it was a gift.  I'm not one to voluntarily talk about religion.  I'm not one to invite a complete stranger to my home.  Somehow, that all happened.  He had so many questions about the Gospel that I believe in.  He has read the Standard Works, memorized the Articles of Faith and studied many more things pertaining to the LDS religion.  We had hours of conversation about things he didn't understand like prayer, revelation, life after death, life before this life, faith...agency.  In answering his questions, I realized that really do believe in this Gospel.  Without a doubt, my testimony is strong in spite of my trials and more importantly, despite my every growing fatigue and even worry.  And though it was just one day, it was an important day to me, an unexpected gift to be reminded of why I stay in the wrestle.   I haven't talked to him since then really.  He has other adventures planned.  It's interesting the people who come and go and cross our path in meaningful, albeit brief ways.

So, in the messy mix of my overwhelming days...there are gifts to be given and gifts to receive; more beautiful than you can imagine.


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Monday, August 14, 2017

Moving ahead

Last night, my home teachers came over and they posed the question...

"How do you see yourself getting through all these trials in 2 or 3 years from now?"

On Friday, our Immunologist asked me a similar question.  He gets overwhelmed at the situation we are facing with all three of the kids having extremely complicated and difficult health challenges.

 "How are you getting through this?" He asked. "I need to know that you are taking care of yourself.  Your kids need you more than ever.  There is no doubt in my mind that you are the reason your kids are still alive today.  You need to find a way to be here, healthy, for whatever is coming next."

I don't know the answer to either question.  I don't think I'm doing a very good job of getting through, at least with any degree of grace and dignity.  I don't know how we are going to get through all of this tomorrow, let alone a year from now or 2 or 5 or any number of years.   I do know that I can't think too far ahead or I am easily overwhelmed.  Right now, lots of things are suffering because I am spread so thin.  I've had a hard time keeping up with work and deadlines are passing and I'm slow to get caught up.

On Friday, after we were done all the testing, we met my niece at a mall in Salt Lake.  The kids were agitated and upset and then something insignificant happened and every one fell apart.  I had to suggest that my sister and her kids just head off on their own and we would meet them after dinner.  They left and there, in the middle of a parking garage, we melted down.  Before the melt down comes the contentious arguing and blowing up- much like a volcano.  We bubble and toil and the superficial stuff spills over and then anger ensues and they blow up and what is left behind is this gentle, almost still, pond of sadness, sorrow and even fear.  It's a humbling process to witness and almost beautiful.  Brutal...but beautiful.

I'm always relieved when it happens this way because then we can start working through the real things that matter.

Even still, I'm not sure how we will move forward.  Generally speaking, we will do what we've always done.  We will get up every day and do what the day requires and we will pray like crazy and try to feed our hope and dwell in Faith.  I guess that's the best we can do.

I wish, more than anything that I could change the work I do.  I wish I could rely on a design income instead of 6 other jobs just because they are steady pay I can count on.  Every time I consider quitting, I hear someone say that another recession is coming by 2019 and I know that I will not survive ANOTHER recession as a designer.  I dread the thought of that.  I am barely getting back on my feet from 2009 messing with me.

So, I don't really know how to move ahead.  I'm stuck and I'm tired and I'm worried...but I'm also trying to have Faith that things will unfold as needed and as long as I'm living right, we will be okay.  I just wish I didn't have to be so tired and exhausted from working so much.


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Sunday, August 13, 2017

25 years for Shelbie

We interrupt our current drama to bring you a little birthday joy and happiness!

Shelbie is 25 years old today!

She seems to get more and more beautiful with each passing year.  I think the more she is tested and tried, the more refining she endures, the more beautiful her spirit becomes and that reflects so much in her physical appearance.  I'm so proud of her.

At Immunology clinic this past week, our doctor asked if she was still working and Shelbie replied that she was.  The doctor was astounded that she was still getting up every day, making an effort to continue living her life, setting goals and moving forward.  He said, "I am completely humbled to be a small part of your life!  I have patients with some minor immune issue who have chosen to go on disability and do nothing with their life.  You have so many things wrong, epilepsy and demyelination alone is reason enough to slow down and even do nothing but you keep on going.  That is unbelievable."

It is unbelievable.  She is an amazing young woman.  I'm proud that she is actively wrestling the demons of life...and chronic health problems.  She is becoming something great!

Tonight, the kids had their traditional Sunday night game night with their friends from their Young Single Adult ward.  What a great group of young people!  She is surrounded by so much love!  It makes me so happy to see that my kids are a part of this Gospel and a strong representation of youth who strive to be good, loving people.

Her friends brought a cake and she was so surprised! 

I made a few different kinds of cupcakes and cheesecake


My kitchen has never been filled with so much dessert!  There are clearly not enough people here to make a dent in this celebration!  I gave them all orders to leave with a plate of food. 

Now, they are playing games and I will probably fall asleep tonight to the sound of 20 young adults laughing and sucking the life out of this moment and it makes me happy.



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So it goes...

We had a big day on Friday at our clinic appointments.  I was feeling a great deal of anxiety going into Sam's appointments with the new Electrophysiologist.  I have heard mixed reviews on the doctor we had and well...I've already voiced my opinion on new doctors.

However, I was pretty relieved when he came in.  He is an older guy and clearly feels comfortable in his arena of electrophysiology.  I really like his PA as well.  At first, he didn't say much and I heard the dreaded sentence...Well, Lance Armstrong... I shut him down real fast!  But, he wasn't offended.  He said he appreciated me saying that Sam has been deteriorating for the past couple of years.  It's interesting to actually see his heart function dwindle over time, on paper.  At any rate, by the time the appointment ended, we were joking around and he had loosened up enough to laugh along with our teasing.

Sam's heart rate on Friday was 37.  Dr. F had him brisk walking in the hall for a few minutes with a pulse ox monitor on, just to see how high his heart went and get an idea of how winded Sam is doing something as basic as walking.  His heart jumped up really fast to 128 but dropped even faster as soon as he stopped. In less than 10 seconds he was back down to 53 and then settled in the 30's.

We had a good conversation about telomeres, mitochondria and chiari's.  He admitted that we are his first patient with DC, Chiari's, short telomeres or mitochondrial issues, yet he was aware of each of these conditions with exception of Dyskeratosis Congenita.   He said Sam's heart is behaving like an elderly person which makes me think the telomeres are our biggest problem.

We also talked about the prospects of a pacemaker but only in general terms. Dr. F wanted Sam to do a 48 hour holter monitor test and a treadmill stress test in the afternoon.  During the treadmill test, Sam struggled to keep going.  I wasn't allowed to be in the room, (thank goodness! I'm still experiencing PTSD from Spencer dying back there last Fall.) but they had the PA in there with him the whole time.  I guess when it was done, they had a heart to heart talk about getting a pacemaker.  He asked Sam how he felt about that and what his worries and concerns were.  If that is what they determine needs to happen, it's not going to be an easy road for this little family of mine.  Recovery is about 6 weeks and that is going to be hard for Sam, the boy who is on the go.

Immunology wasn't filled with good news.  Spencer is fairing the best of the three kids.  Sam is about where Shelbie was 3 years ago.  He really is in pretty rough shape but I already sort of knew that since he catches everything that comes along.  Because of his heart complications, there isn't much we can do until a plan is in place for helping Sam's heart.  Dr. Gundlapalli is teetering between diagnosing Sam with Common Variable Immune Deficiency and Selective Variable Immune Deficiency.   He said that soon enough, he will most certainly be CVID.  He wants to hold off on Plasma transfusions as much as possible because it's a life long medication and he's so young still.

  Ideally, he wants to see if daily antibiotics keeps him healthier but the medications he would want to use affect the heart and liver so that may not be a good option right now.  We are in a holding pattern for a couple of weeks.

For now, we will watch Spencer closely.  And Shelbie?  She had a seizure while we were in the room. Dr. G is such a tender hearted doctor, he was really good with her and helpful in calming her down.  I don't know what I would have done without him there.  I think he knows more than our team is letting on because he kept saying that the plasma will not only help her immune problems but her demyelination problems as well. I haven't heard anyone tell me she has demyelination issues.  I skirted around that issue.  I have enough to worry about right now.

Friday just wasn't a good day.  We had an impressive melt down as a family Friday afternoon.  This life of ours is taking a toll. It's been upsetting to watch the kids go through this.  There are going to be some hard days in the near future.  We go back soon for GI check ups- Spencer is losing weight and mass.  He's down to just barely over 5%  body mass.  Sam's eyes are yellow and I can't keep putting off his liver issues.  We see our heart doc next week and I anticipate a decision will be made about Sam's heart.

I feel like I'm quickly running out of space to do anything but all this medical stuff.  Any extra stuff overwhelms me.

But, today is Shelbie's birthday!  25 years old.  That makes me one old mama!


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