Tuesday, December 12, 2017

Last Surgery Done


Well, our last surgery for 2017 is in the books and that's a wrap!  At least for now.  It was not without it's frustrations today and fearful moments last night.

It's always amazing how much you can see the hand of God when you're paying attention.

I had intended to stay in a hotel on Sunday night rather than staying in Provo with Spencer.  His dad lives 10 minutes from his apartment so the plan was that he would swing by Monday morning and pick him up.  I had this gnawing feeling that I really should stay with Spencer so, that is what I did.  Sunday night was going okay.  He got 32 ounces of the colon cleanse stuff down within an hour and we just watched movies the remainder of the evening.  He was doing fine.

At about 11, we decided to call it a day and he insisted that I sleep in his bed and he would sleep on the couch.  His roommate had surgery last week so he is home recovering with his parents so it was just Spencer and I.  I didn't fall asleep until just after midnight.

Just before 1:00 am, I awoke to Spencer yelling for me, "MOM!  I need your help!"
His apartment is small, just a two bedroom so it didn't take me more than a second to run to the hall where I saw him clawing at the wall to keep from falling to the floor.   I grabbed him just in time and tried to lay him down gently on the cold tiled floor.  His face was ash grey and his eyes were rolling back in his head.

It's amazing how your brain can process literally a million things in less than 10 seconds.  I cradled his head in my hands and in disbelief just stared at his limp body while yelling, "Spencer!! Don't leave me!  Stay with me Spence!"  In that amount of time, maybe a few seconds longer, he opened his eyes, I couldn't even believe we were doing this again!

As I sat on the floor beside him, I was trying to figure out what to do...was it his heart?  He had to stop his heart medication in preparation for surgery.  I had the thought that maybe his blood sugar was low.  I thought about calling 911 but didn't have my phone close by and I didn't know his address, apartment number or even landmarks to describe where to come.  I wondered if this was how it was going to end...should I try to save him or let him go?  And somewhere in all of that mess in my head, I just called up to Heaven..."God!  I need your help!"

It was 20 minutes or so before I could get him back to the couch.  I just sat beside him with cold towels on his head.  I stayed beside him in the living room the rest of the night, afraid to sleep.  I was so grateful that I had chosen to listen to the spirit telling me to stay with him instead of in Salt Lake at a hotel.

I had a chance to talk to our doctor before surgery started but honestly, I think we're at the end of the road with her.  I told her about our night and she just stared blankly at me.  I reminded her that Spencer had a pacemaker and she was in the dark about that too.  I asked her if she would test his blood sugar levels and she kept arguing with me that that was not easy to do.  Honestly, I just had to walk away.  I was literally standing in the surgery suite with Spencer at one end, me at the other and a bunch of random people watching me talk to the doctor.  I don't even understand why they took me down there.  It was uncomfortable and she was making no sense to me.  It was like she really didn't care what we had been through!   Spencer was still conscious so I gave him the 'I love you' sign, and walk away...with tears in my eyes.

From there, I went up to the cardiovascular center to see if I could talk to our device nurse.  They are top notch there!  They took me right back, they listened to what happened.  They called our doctor who was in a procedure.  It was a night and day difference.  Within an hour, they had a plan going and met me down in recovery where they interrogated his pacemaker and loop recorder to determine what happened last night.   They don't believe his heart was involved in the episode but they did find 63 other significant events in the past 4 weeks! Ugh...but his pacemaker is keeping the pace and keeping him alive so I guess that's good.

Once they left, our doctor who did the surgery came back in and again, she was not helpful.  She said his GI tract looks completely normal.  So, I asked her if that made any sense and she agreed that it does not.  She said, "Well clearly, he's wasting away."
"I agree! So, where do we go from here?  He can't continue to live like this."
"Well, I don't know.  Just know I'm here waiting for answers just like you are.  I think he's depressed.  I'm going to suggest he start medication when you come back in two weeks.  That will help him put on weight."
"I don't think he's depressed.  He's sick.  Sick and tired but not depressed."

  I guess we will wait to hear from pathology on the biopsies.  I asked her again if she would please check his sugars.  She kept saying, "It's not as easy as you think it is to test that."

Out of the blue though...a nurse came in later and checked his sugar with a glucose meter- not hard at all and sure enough he was low at 60.  She brought in juice and tried to get him to wake up and drink it.  She also said they typically hang a D5 IV when it's this low...but of course...that didn't happen.  As soon as we could go, we did.

A little frustrating today.  A little dramatic.  A lot of blessings and a few tears when I had to say goodbye again!! I made him swear to me that he would eat something every hour.  Now, I'm in a mad scramble to find an Endocrinologist and figure out what is going on with his sugar levels.

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Sunday, December 10, 2017

What If...

I'm in Provo tonight with Spencer.  Tomorrow morning, before the sun wrings out the last of the dark night, he will be checking in for surgery at the University of Utah Medical Center; hopefully our last procedure of 2017 and the one we have waited three months for.   He was home for a couple of days for a wedding gig he was hired to do back in February, so I followed him back this morning and stayed at his apartment for moral support while he does his surgery prep.

For 4 hours, I had some time to wander around my head while Christmas music looped through the speakers of the car, more white noise than anything.   But, the line of a song I've never heard, caught my attention.   In it, a line, something like this..."What if Jesus got what he deserved?"

 There'd be no manger, no Wise Men,  no gifts, no Shepherds, no Angels, no star of wonder and light, no goodwill, no peace at this time of the year; peace this world so desperately needs... In other words, for the Prince of Peace, The Savior of the World, Jesus Christ; surely he should have been born under circumstances more fit for a King.

Man, I've thought about that all day.  What if any of us got what we deserved?  How many miracles would we be missing out on?  The humility, the wisdom, the guidance, the Spirit that visits us and calms our troubled heart? The generous gifts of the Spirit? What of the light and wonder as we see miracles come in the midst of a trial? Imagine never feeling the goodwill and kindness of others because things like that rarely happen in circumstances more deserving.  How would we ever come to know peace if we had never understand chaos and anxiety?

The more I think about this, the more I think about Mary.  Surely, she deserved more.  She must have been an amazing woman; a woman of great strength, with faith that made her equal to the task at hand. I can't imagine Mary ever complained about the less than deserving circumstances she found herself in; after days on the back of a Donkey, then no room to rest, all while 9 months pregnant.  I'm sure she felt painfully human at times but a paradoxical sense of strength as her spirit rose above, and rather than complain, I imagine her engaging the spirit for strength to be the woman God had set her apart to be.  Surely, she must have known it was necessary and needed, something we all deserved- a Savior.

What if, in the midst of our trials, we too could see beyond our painfully human experience to the sanctifying rise of the spirit.  What if we too, could see that the struggle is the best part of a deserving life?  Imagine all the light and wonder we forget to notice?

I hope tomorrow, as I think about Shelbie at home having a really hard time, Sam struggling with his neurological problems and sit by the hospital bed of Spencer, what if I see, instead, a Manger that sets apart from the cares of the worldliness around us?  That brings to my mind wisdom as I navigate these deserving circumstances.  What if I feel guided and watched over by Angels instead of lonely and isolated?  What if, in these dark and depressing times, I see more light and wonder than I could ever imagine for myself?  What if I tried a little harder to be equal to the task of what is required of me as a mother to these amazing children? What if this is exactly what I deserved?


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Thursday, December 7, 2017

Not enough keepers

This is the best thing I've heard all week...

"It's a Zoo out there and there aren't enough Keepers."  It perfectly describes the mess we have found ourselves in.

Insurance.  It's going to send me to an early grave, there's no doubt about it.  It's an impossible problem to which I can see no answer.   It's become my full time job.

The saga continues over the insurance mess my Wasband managed to get us in.  I know he had good intentions...but that doesn't change the fact that it's a mess.  You know it's a disaster when The State of Idaho and Health and Welfare say, "Oh may God bless you."  Sadly, this has not brought out the best in either of us.  Wednesday, I spent 30 minutes in a heated discussion with my Wasband over what to do.   I can't talk to him anymore about this.  I literally get dizzy and feel like I'm going to pass out when we have to discuss this.

He wants a solution with a guarantee.  That does not exist. I want to just make a decision and live on faith and a prayer.  I have spoken to my accountant, my insurance agent, my insurance company, the State of Idaho, the Department of Health and Welfare and no one can predict the outcome of this.

Our two options are, try to get the boys off the Wasband's old plan and pray that Bridgespan steps up to the plate and reprocesses all the claims for 6 months and covers the ER visit for Spencer to St. George and a hospital that is out of network.   If this happens, the worst case scenario is, I end up with a $3500.00 bill.

The second option is to leave it alone, let the Wasband's plan pay out as a primary insurance for the 6 months the boys were on it and when I do my taxes in 2018, I will get nailed with all the tax credits for 6 months.  No one can say exactly what this will be but a rough calculation is over $5000.00, and that is merely a guess.

My vote is try to get the Wasband's insurance to just take the boys off the policy and we pretend this whole thing never happened and I take the hit from the ER visit.  My Wasband wants to just leave it alone and I take the hit on taxes.  The problem is, I'm already on probation with the Federal Government from a 2014 disaster which has now been cleared up but for 5 years, I can't make one filing error or I owe them $8000.00.  It's not going to look good for me if this happens.  But maybe Federal prison isn't such a bad thing.  I mean, I could learn to like the color orange and flip flops look comfy.  I get three square meals, a gym pass, a little tv time.  Maybe I could write a book or something fun like that?  You never know?  There could be worse things.

Today, another disaster unfolded in my insurance world.  Since Spencer is working in a different State and insurance is offered as a benefit, by law, he has to accept it.  He got the policy today and they will pay the premium but the deductible is $8000 and not one of his doctors are covered! So now what?  Finding a new team of doctors is absolutely not an option.  If we can somehow find a way to make this work, so he can see his doctors, I'm stuck with his deductible and our family deductible.  That's going to be over $10,000.

I feel like I Never. Get. Ahead.  I lost two big homes I was designing today.  It's a builder's market and homeowners are starting to get scared to build.  Bids are through the roof and it is difficult for the middle class to ever have the dream home they want.   This makes my total of job losses this week alone, 4.  The other two I was suppose to meet with next week and they've already got cold feet.

We are back to living on shear faith but oh...the energy that takes.  It makes me really scared to spend one dime of the $5000.00 gift I received.  I think I need to prepare for another recession in my life and it's likely coming sooner than later.

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Wednesday, December 6, 2017

Downsizing

I've been trying to figure out a way to tighten the belt of the family budget and that's a tough one.  We live in a very simple way and don't really need a lot to be happy.  There is one area that drives me crazy...all the time.  Satellite TV.  What a waste of money so when I announced to this tribe of mine that TV was going the way of the Dodo bird, there was a small uprising.  So, I bargained with them that I would buy Apple TV, Netflix and Hulu and still save myself over a $100 every month. 

On Black Friday, as promised, I bought Apple TV.  I brought it home and put the boys in charge of disconnecting the Satellite and connecting Apple TV.  While they did that, I jumped on the computer to cancel Satellite service.  I figured I would do it online because I was all peopled out for the day and it was probably easier online. 

So, nope.  Not easier.  I've had the same service for 8 years so I couldn't remember my log in information.  I got locked out of the account so I had to call a real, live person.  Ugh.  It use to be all I wanted, was to speak to a human being rather than a computer but I've since changed my view of that. 

I explain the problem and he proceeds to run me through the most preposterous exercise to cancel service.

Satellite Man: "I'm going to need your 4 digit pin."
Me: "That's the problem, I don't know what that would be.  It's been 8 years."
Satellite Man: "Well, I'm going to need that in order to disconnect service."

Apparently, he thought I was joking when I said I didn't know the 4 digit pin...So, I had no choice but to throw out some random combinations of my favorite numbers.

Me:"5974"
Satellite Man:"Nope"
Me: "3247...6453...5419...4296..." I just rattle off a series of numbers and with each permutation he says, "Nope."  I know he's never going to say yes so I say, "I'm not sure if you heard me earlier on but I don't remember the 4 digit pin.  I can give you my social security number, phone number, birthday numbers, the number of kids I own, my house number...that's 880... I have...Oh...I have the account number you use to bill me each and every month...would you accept any of those numbers?"

I may have said that last part with a hint of sarcasm. Then...
Satellite Man: "How was your Thanksgiving?"
Me: "Fine."
Satellite Man: "Mine was fine too.  It doesn't even feel like the holidays."
I didn't say anything because it wasn't a question but then he says, "Did you want to know why?"
I'm thinking there's a punchline here so I say, "Why?" expecting this to be a good joke.
Satellite Man: "Because everybody's grouchy."

I ignored that...

Me: "As I said, I don't have that.  Is there another way to cancel my service?"
Satellite Man: "I guess you could answer the secret question."
Me: "Okay, what's that?"
Satellite Man: "Who's your childhood hero?"
Me: "Huh?  I don't have a clue! Why is this so hard?"
Satellite Man: "It's a problem we have of people shutting down someone else's service."

Is this really a thing?  A  new terrorist plot to destroy someone's night in with re-runs?  Is it because there is nothing good on TV these days and terrorists get bored with the usual methods of spreading terror?  Whoever has time to mess with someone's TV needs a hobby and a therapist.  Maybe they need to turn seeing a therapist into their hobby! Dumb.

Anyways...

 So, I turn to Shelbie to ask who her childhood hero was because somehow her email was on the account so I'm thinking she messed with the log in too.  She says, "You."  So I say into the phone..."YOU!"
Satellite Man: "No ma'am."
Me: " Not you, Me, Mom, Kathy...Kat...Kath"
Satellite Man: 'No ma'am."
Me: "Oh for crying out loud!!  Bozo the Clown!"
Satellite Man: "Okay!  That actually worked!"

What the heck?! Seriously, this was a 45 minute phone call.  I feel like this guy and I bonded over secret questions and random numbers!  I'm going to have to send him a Christmas Card.

Finally got the service cancelled but the following Monday, the Satellite company calls me back to apologize for the run around I got because let's be honest, if I was calling to add to my package, you can bet I wouldn't need secret answers or random numbers.  They begged me to stay and I said "NO."
They said, "Why?"  I said, "Because it's too expensive."

They proceeded to put me on a series of brief holds and each time came back with a lower price in order to get me to stay.  Each time, I said, "No."  The last offer I had, went from $159 a month to $40 a month for two TV's for 2 years!  I didn't sign back up but their effort was admirable.

In honor of such a fun time I had with Satellite Man, every secret question, no matter what it is, is going to have Bozo the Clown as my secret answer! 

Fun times...I don't even know why my kids need TV at all.  Have they not been paying attention to the life we live...it's the best reality show out there! 


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Tuesday, December 5, 2017

PET scans and CAT scans

We are a fine crew...so many tests, so little time.

I got Shelbie's PET scan results back yesterday as well as her Tilt Table test from September.  It was not favorable news.   For starters though, her granuloma tumor in her brain remains stable.  The temporal left lobe, cerebellar and the hippocampus are all 10% smaller than the rest of her brain.  There is mild hypometabolic activity.  This is not good news.  This is showing a quite a slowing down in those parts of the brain, the parts that are pretty important for memory, mobility, balance and some other vital functions.  In some ways, this supports the epilepsy diagnosis and shows the brain damage that has occurred from 25 years of seizures.

She has an increase in a protein that controls blood clotting and can contribute to an increase in strokes.  This is interesting since they ruled the 'stroke' to be a seizure but now, we are back to...it could have been a stroke or two she had, not seizures.  The PET scan also showed some possible seizure involvement in other areas of her brain than they had first suspected. 

Our doctor was honest and said she isn't exactly sure how to put all of this together so she is having a large conference again with various Neurologists and they will look in more detail at the scan and determine the next course of action if there is one.

She was also has deterioration in the nerves of her legs.  They have been hunting this problem since our Seattle Days where they did electrical stimulation studies.  From that they discovered clonus (seizures) in her leg muscles and tethered nerves in her legs.  The deterioration is new and was diagnosed via a sweat test.  Again, it's a puzzling issue.  To me, all of these point to mitochondrial advancement as they all have to do with energy and metabolic issues.   We will have to be patient until the Neurologists meet and put it all together.

Samuel has gone downhill in the past few days with his neurological issues.  Sam is my kid who can be hanging over the toilet puking and swear to me that he is not sick.  So, when he admits to any discomfort it's a big deal.  His dizziness has gotten worse, his head hurts when he moves it, or coughs or sneezes, even rolling over in bed hurts his head.  The newest issue though is he is stumbling and falling which is never something he does.  The boy can balance on a 2" webbing, suspended 6' above the ground and even do a flip on it, so something's not right.  I think I finally found a Neurosurgeon in Utah who specializes in Chiari's so I will try to get an appointment soon.

Finally, my kidneys are still taking a beating.  The CAT scan didn't show any kidney stones, so it's off to the Urologist I go!  Ugh.  This just can't be good.  I'm so bugged.  It's been dragging on for weeks now.  I'm sure it will be days before I get in.  I also need to see the Rheumatologist and get a handle on the Lupus. 

That's it for today's fun.  Spencer has started his prep for surgery on Monday.  It's weird all the little details he has to go through before Sunday.  I believe he has to start a clear liquid diet on Saturday so by Monday morning, I'll probably be able to toss the poor kid over my shoulder and carry him into the hospital like a rag doll. 

I'm trying hard to stay in the moment and focused on what has to happen for the day, the hour.  Insurance continues to be a thorn in my side and has yet to be worked out. 

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Monday, December 4, 2017

Secret Santa

We had the surprise of a lifetime on Friday morning.  I was expecting a meeting with some clients who were coming to the house to go over house plans.  Just before the time they were suppose to arrive, I ended up on a phone call from my doctor's nurse who was giving me further instructions for more kidney testing today.  In the middle of that, I heard Shelbie shriek from the front room, "MOM!! You better get out here!"  No sooner did she say that but the doorbell rang. 

I practically hung up on the nurse and hurried to the front room.  I opened the door and saw this sight!

Photo Credit- East Idaho News
 So many friends on my front walk as well as two news cameras and some other news people.  It was a local news station- East Idaho News.  Every December, they help a Secret Santa give away $100,000.  This year he doubled the amount to give away.  We happened to be one of the lucky families.   I was absolutely stunned and shocked and immediately humbled.

With the news team and friends, was the up and coming, amazing vocalist Lexi Walker.  She is a 15 year old with the voice of an Angel.  She sang at President Trumps Inaugural Ball earlier this year and has done gigs with Alex Boye, The Piano Guys and even big names on Broadway.   She was here to see us "We Wish You a Merry Christmas" It was so amazing!

Lexi Walker- Photo Credit East Idaho News

I'm still in shock over this.  People have to vote each year for those in the community they think are deserving of money from the Secret Santa.  It is usually people who have faced hardships of one kind or another.   I think part of why I was so surprised, is because I don't really feel like we have hardships.  I know we have crazy stuff going on but we manage and it's not something acute like cancer that comes so unexpectedly.  It's all we've really known.  I guess we still face the unexpected every day but somehow, I've never really thought of us in that way.  

I was told that over 40 people voted for our family, which again, had me perplexed.  I didn't think 40 people really knew us all that well let alone 40 people all thinking we could use some help!  It's incredibly mind numbing for me to consider. 

From the moment I opened the door until an hour after everyone left, I cried.  In some ways, it felt like the cavalry riding in to the rescue.  We get by just fine but I won't lie, this money has alleviated some serious worry and anxiety.  On Friday afternoon, Sam's car died.  I can't even tell you how happy it felt to not freak out but calmly get it taken care of and pay cash.  He also had very bald tires so I could get him new tires too.  There have been some other unexpected problems this weekend and the money helped take care of those. 

Along with the money, we were given 4 tickets to Lexi Walker's concert here at the University on Saturday night.  It was such a beautiful concert and felt so good to do something other than working.  

We are feeling so blessed and humbled...in many, many ways.  We really missed Spencer and I was hoping he could have come home for the concert but he had to work.  
Photo Credit- East Idaho News
  
Just the simple words 'Thank You' hardly seem adequate for something such as this.  My heart has so much more I want to say but I remain overwhelmed.  I don't know all the 40 some odd people who voted for us.  I don't know the Secret Santa or all the people it took to pull this off.  I wish I could thank them each individually. 

On Friday night, Shelbie wanted to support a friend who was having a fundraiser for IVF.  While we wandered around the craft booths, we came across a wooden sign that said, "We can do hard things."  She bought it and Shelbie said, "I feel like we can really go on to do hard things."  

There is so much power in kindness.  In showing up.  In a lot of ways, seeing all those people on my front step meant more to me than the money.  When I burst into tears, I had no idea there was a check involved.  So often, we feel isolated and on the fringes but on Friday, we didn't feel so alone.  It was a good feeling. An overwhelming feeling...but good.  The news video has now circulated a million times across the internet and I'm totally embarrassed.  I couldn't even walk through Walmart without being recognized as 'that lady from the news'.  I love my quiet, little invisible life...ha ha.  

Thank you for all the wonderful people who care! 



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Friday, December 1, 2017

How Quickly It Falls Apart

Believe me when I say...you can not have a moment or two of enlightenment that isn't directly followed by the very extreme opposite.  I knew this was coming and here we are.

This day completely fell apart and my life just got exponentially more difficult and I can't even believe it.

I have been getting phone calls over the past few days from healthcare providers asking me to send them insurance information.  In addition to phone calls, I have received two letters stating the same thing.  Until today, they didn't say specifically what the problem was and it's a mess.  I even had a billing clerk from the University of Utah say, "God bless you because you just fell into the biggest insurance mess I have ever seen."

That's reassuring. 

Here's the short of it.  My Wasband thought he was being helpful and put our kids on his wife's insurance policy.  It's against the law, if you are in the healthcare exchange to have a secondary insurance policy.  I didn't know they had done this until Spencer's surgery 4 weeks ago, nor did I know it was against the law.  He happened to be there upon check in at the hospital and put it on his file.   I didn't think much about it because we have met our out of pocket max for the year so I didn't think it would matter.  Oh, it matters.

Now, my insurance company, from the exchange, is and has, in some cases, retracted every dime paid out since June 1.  I have been on the phone for two hours late this afternoon.  My insurance is refusing to budge.  The State of Idaho has opened an investigation into me and the situation as of 5:20 pm tonight and I have some pretty angry providers who have lost a lot of money.   I have no clue how this is going to work itself out.  I had no idea this was even a thing...that anything this disastrous could happen.  I don't understand how insurance companies can just take money back like that.

This has now become a full time job and that is no exaggeration.   I'm suppose to hear from the State of Idaho's Escalation team in 3-5 days with their ruling on what is going to happen.  The other setback today was that Spencer's ER trip when his heart stopped was out of my network but in his dad's network.  So, if we are allowed to go back and remove the boys from the secondary insurance and pretend that never existed, I have to pay for the ER visit, over $3000.00.

I am also trying to get signed up with new insurance for the coming year and that deadline is looming.  I had decided on a plan and company, basically the only one I can barely afford, but it looks like they won't cover one of our meds- the plasma that Sam will likely start early next year.   I will hear back on that tomorrow.  Of course they've employed a middle school child to handle their pharmaceutical division so that was challenging to explain what plasma is and why we need it.  (insert eye rolling)

Before all this, I went back to recheck my kidneys this morning and there is no improvement.  They want me to wait one more week and test again and I'm just done with this.  I have no clue anymore what it feels like to be healthy-ish.

It's been a rough week but I knew it was coming.  I even told my kids Sunday night..."buckle up we are in for a wild ride."  I felt it in my bones...Never fails.  This kind of stuff always happens after I speak in church.  Always.  100% of the time.

On a lighter note...When I finally got home from work at 9:30 tonight, Shelbie was the only one home so we went to the grocery store for milk and other essentials, like donuts and popcorn.  It was actually so much fun!  We wandered the aisles, sharing stories from our exhausting days, laughing and just taking a break from the worries that tried to topple us today.   We came home and made dinner- Ichiban.  I usually just buy Top Ramen but when the kids were little and we were richer, I bought Ichiban.  It's so much better than Top Ramen...honestly but instead of 4/$1 it's a dollar each!  I was feeling so rich tonight so we bought a package for each of us.  That's what we had for dinner!  at 10:30 tonight!

I know...it's sounds stupid but it was really a fun little end to the day.  With her first bite of Ichiban, she said, "Oh my gosh, it tastes like childhood."  ha ha...my kids are crazy.  It doesn't take much to make them happy.  It's always just the little things.

I just keep reminding myself that this is all just a test...it will pass and I need to have faith this insurance problem will sort itself out.

I do love this quote I saw today...



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