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Showing posts from October, 2016

Day 4...

It has been a frustrating day but I feel like maybe we are making some headway in getting a diagnosis.   At least it feels like the wide net they cast has been narrowed down a little.

The morning kicked off at 4:00 am!  The sofa in her room is plenty comfortable but the most I can sleep is 2 hours, maybe 3.  When they came in for 4 am vitals and bloodwork, I went to the family bathrooms for a shower just to beat the morning rush.  I came back to her room a half hour later and answered some emails, did a little work and then took a nap at 7.

We didn't have to endure the whole rigmarole of rounds with a dozen residents, fellows, attendings etc from all different specialties.  I was pleasantly surprised when just our doctor came in.  Our good old Dr. Shami. He is a goldmine of intelligence to me.  He had some students with him but I didn't care about that, we finally had some continuity of care and tomorrow we might get to see our Immunologist Dr. Gundlapalli, another one of ou…

Today's events

Today has been an alright day.  I got very little sleep last night; tossed and turned and maybe got 2 hours in.  I haven't been too tired today which is surprising, mostly restless.  I have had to take a lot of walks.

This morning, we went on a little walk up to the cafeteria for some lemonade and we wandered the halls looking at the art.  Huntsman's has amazing art down each corridor.  It's more like a gallery than it is a hospital.  While we were walking, a whole group of church members were walking down the hall we were in.  They were very friendly and asked if we were planning to go to church.  I wanted to go but Shelbie had to get back to her room for rounds and more testing.  They said they would come to her room.  A little while later, they did come and read a thought and blessed the sacrament for Shelbie and her dad.  I decided to go to the meeting upstairs.  They asked me to give the opening prayer.

I felt very strange in my animal print leggings, converse and o…

In the long hours

I have spent a little more than 20 hours in the car this week as long ribbons of highway stretch out ahead.  I rarely have quiet moments in life.  They may happen between the hours of 1 am and 5 am when sleep hides behind the changing landscape of my mind. So, I have been taking advantage of the time to search for understanding and peace.

I ramble on with disconnected thoughts at the steps of Heaven, hoping God hears me.  I haven't been able to understand the events of this year and this year has been eventful.  I don't understand what is happening to Shelbie.  I don't understand how everyone around me seems to find answers and treatments and solutions to their problems but we still clamor and climb against a growing wall of problems and roadblocks.

In a response to my Bishop's wife, I texted these words on Friday night...

        "It boggles my mind.  Like, in an unbelievable way.  I don't understand why my kids are still here?  I mean, we have tragic things…

The stroke

Thursday was an interesting day.  Before 9 am, I received two emails that notified me that I had been laid off from two different part time jobs.  I could hardly believe my luck?  Losing two jobs in one day.

Also on Thursday, the vacuum broke, the washer broke in a messy way and as the day was wrapping up, I got a distressing call from Shelbie who was coming home from a photo shoot out in the country.  She was very upset and described a neurological event that almost left her in the ditch.

She felt a strong vibration in her head and nearly simultaneously, fell over the console of her car and then lost her vision.  When she was able to gather herself and her vision came back, she was weak, confused and disoriented.

At first, I thought, "Now what?"  I was at my night job and had a million things to do.  She was about 10 minutes away and wanted to try and drive home so I let her!  I know...bad idea.   Anyways, about 5 minutes later, I had the most overpowering feeling that I …

A lesson in whining

Long day...this is where I whine about how I screwed up and forgot to pick up the contrast for Shelbie to drink while we were in clinic so she could have a CT scan right at 3pm...

But instead of whining, I'm feeling pretty blessed and sufficiently humbled because at 3:30 when we showed up late to the CT Scan and immediately remembered what I was forgetting all day...We stood beside a lady who had no nose.

It wasn't just that she had a flat spot on her face with smooth skin, she had no nose.  Instead, she had a large, gaping hole so you could see the back of her head.  In that moment, whatever else we were feeling, really made no sense whatsoever and paled immensely in comparison to this woman.

My error put us behind an entire hour because she had to drink a liter of contrast over one hour before they could do the testing.  By the time we got back to clinic it was late in the day.  There was only one person sitting in clinic and on her chest was the tiniest baby.  He looked a…

The heart of the matter

I wasn't going to write tonight because Shelbie and I are leaving before the sun even considers rising for the day but it's been one of those days.

My heart is heavy but my soul is light.

These weeks are not passing easily and today was hard.

We had to scramble to get Shelbie's transfusion done and since UPS messed up...AGAIN and delivered it to the wrong house...we got a late start and that is why I'm still up.  The nurse was gracious enough to come all the way up here to get things started at 6pm and she stayed for a couple of hours and then I had to take over.  It's not a big deal but it's still going strong.  I have to take her vitals every hour so that means I stay up until after midnight when it will finally be done!

Spencer got word that his friend was killed in a hiking accident.  He worked with him at Snowbird last winter.  The young man will be leaving behind his 6 year old daughter.  It hit pretty close to home tonight and just a week after anothe…

Boarding the Crazy Train

This crazy train we are on is gaining momentum.

It's hard to believe we are clear back to square one with Shelbie and the mystery disease but that's exactly what it feels like.

I texted our Immunologist this morning to see if he could weigh in on what he thought we should be doing with Shelbie.  I even sent him pictures of her swollen leg.  He was very quick to tell me that this was not normal and probably not cellulitis but he felt that staying on the antibiotics was the best thing to do until they could sort things out.  He contacted our Oncologist, they had a meeting of their minds and then gave me instructions to contact our Oncologist's nurse which I did.

Their feeling is that the enlarged lymph nodes in her abdomen and around her aorta have grown and are now putting pressure on her vascular system and that is creating the swelling in her leg.  They don't think it's likely a delayed response from her surgery earlier this year.  That could be and I thought abou…

Trouble

Trouble is brewing in our neck of the woods.

I did end up having to take Shelbie in to the Urgent Care this morning.  They sent her on up to the hospital for an ultrasound because her leg is in terrible shape and they thought she had a blood clot.  The ultrasound was negative for a blood clot so they sent us back to our doctor and they decided to treat it for cellulitis.

Cellulitis is a bad, bad deal but, I'm just not convinced it's going to be so easy.  Not that cellulitis is ever easy but this does not seem like cellulitis to me.  I think something is very wrong with her entire lymphatic system and I'm not sure this isn't going to end her up in the hospital in Utah.  I'm pretty anxious about it actually.

Before leaving the clinic, they gave her a shot of Rocefin and sent us home with antibiotics.  They said if it isn't significantly better in 36 hours, then we needed to go to the ER.  It's not any better.  I realize it's only been a few hours since…

A not so perfect week

Things have been fairly stable around here, all things considered.  Sam is doing well post biopsy and still no more results than I've already reported.

Other than some heart issues Spencer had last Sunday, he is status quo.  I got a call around 10am from the monitoring company to once again say, "Is your son doing okay?"  Spencer was at church so I really had no idea.  I think that is such a stupid question.  They call because they obviously see a problem going on in his heart so clearly, it's not okay.  They will never give me any information other than they needed him to get back to the computer base at home and download the information from the recorder so they could look at what was happening leading up to the 'event'.  I immediately texted Spencer to make sure he was still with us. I'm not going to lie, my adrenaline was racing through me and I half wondered if I would hear back from him.   He was okay and came right home but we haven't heard an…

Epic Memory Fail

If memory serves me right...

Well, it doesn't.  My memory is at an all time low.

I am always in awe at people who remember everything.  I know a few people who not only remember everything but celebrate all those 1st moments that happened so long ago.  They remember the day their second kid had his first taste of Kale, the precise time and what plate it was served on and every year on that same day, at that same time, serve up Kale on the same plate, to celebrate.

I knew when I was a young mother, that I was not going to be that kind of mom, so I bought one of those Mom calendars for the mothering challenged.  At the back were a bazillion stickers to celebrate all things related to raising a child that you could put on the corresponding date.  1st cry, 1st burp, 1st tooth, 1st belly crawl, 1st step, 1st rice cereal, potty training events, birthdays, half birthdays, it's almost your half birthday, 1st words, 2nd words, 1st curse word...no, it didn't actually have a sticker…

Lots of Adulting Today

Big day today!  I had to be an adult and do adult things like close on my house refinancing!  Yay!  I am so relieved to have that done.  It was a pure act of God that I was able to do this, all things considered.  The first part of September, I woke up on a Friday and had an overwhelming feeling to go talk to my bank and see if they could help me sort out some financial issues.

The mortgage specialist I had was magical!  It was her idea to refinance my house.  I didn't think I had a snowball's chance in you know where of getting approved but just like that...I was!  In the process, I was able to put an entire credit card of medical debt into my new loan, take off 6 years from the length of my mortgage and my payment only went up $30 and my interest went way down. Not only was she smart and efficient and pure genius, she was so compassionate.  When she told me all of this, I couldn't stop crying.  I sat in her office and unloaded about 8 years of struggle.  Even she was fig…

Affordable Care-less

As much as I hate dealing with finances and insurance, I had to today.

For just over 2 hours, I was dealing with insurance alone.  The girl I was talking to forever was very patient and also very apologetic that the company she represents sucks!  The sad thing is, it sucks less than my other choices on the exchange.

I ramble and rant from time to time about how much I hate insurance...of any kind really.  You pay so much and get so little in return.  Just so you know I'm not exaggerating and making numbers up...here is what I received today from my health insurance company, on one child- Spencer.


These numbers are after I met our $2250.00 deductible on one child. Total charges this year for one kid- $35,589
Amount not covered by insurance- $19,614.74
Amount insurance has paid- $14,344.80
Patient Responsibility- $5,527.08 plus the co-insurance of $1629.48 I have to cover

There is still another $12,000 yet to be processed and they are already fixin' to deny some of that! These …

I hate bone marrow biopsies...

If I had any fight left in me, I would start a crusade to stop doing conscious bone marrow biopsies.

Today was a rough one for Sam.  I'm probably a little sensitive and whole lot short on patience but today's bone marrow biopsy couldn't have ended soon enough.

The room where it takes place is about 14x14 so about the size of a bedroom.  One whole wall is cabinets and then a hospital stretcher and a couple of side chairs.  Only, since we are at a teaching hospital, that room filled up pretty quick.

The medical staff didn't stop pouring in...I felt like we were being punked, like how many people can you stuff in a room...Something like this...

There were two nurses, one training the other, three Nurse Practioners.  One who's been at it a long time and is the one we are familiar with, the other two were down from the transplant unit...in training to do bone marrow biopsies.  Then, there is a Medical Assistant who runs errands for everyone, she's like the concier…

Neurology Updates

Day one has come to a close.  Sam did great at the Neuro Opthalmologist's at the Moran Eye Center.  His eyes are pretty much perfect.  He had to have a ton of tests which surprised me a bit.  One such test was an angiogram to look at all the vessels in his eye.  In Dyskeratosis Congenita, the vessels can just die off and leave parts of the eye without blood flow.  Sam's vessels looked good and no sign of any venous malformations.

So, clearly, his vision loss is not coming from his eyes.  That is great news.  They did note that he has a minor Pannus developing around his cornea.  This is a common eye problem in DC kids.  The epithelial cells can grow over the cornea.  He has a start of that happening but it's minor at this point. We will continue to watch that.

He is having migraines with auras but they aren't typical and last longer than a typical migraine would.  So, there are a few more tests we need to do.  He will have an MRI with contrast to make sure that there a…

Whew!

It's been quite a day!

I woke up with a kidney infection and an ear infection!  Lucky me!  I have had a toothache since Saturday but being the stubborn girl I am, have been treating it on my own with snake oil and other myths because you know...you can't spend any less than $25,000 on a single visit to the dentist and nothing can ever be done in one visit!  It takes like 12 visits! Ain't nobody got time for that!

So...after the nurse arrived and Shelbie's plasma transfusion was under way I decided to run down to the urgent care.  I figured I could breeze in and out and no one would miss me.  It took nearly two hours and the doctor wasn't going to let me leave until I confessed to my lack of self care.

I can take care of myself but I don't always care about myself.  There's a big difference.  Anyways, the infection from my jaw has spread to my ear.  It's not just any ear infection.  It's in the ear that I had all the bones replaced with prosthetic bo…

Courage

For some reason, I really like people to think I can handle my life.  I mean, don't we all want to look and feel competent, not only to those around us but to ourselves?  I'm not referring to some form of vanity and pride as in...look at me, I'm so good at managing my trials.  Yay me!  Because...I'm not that good.  I spend most of my life picking myself back up and not gracefully either!

Just simply, the feeling of moving forward and managing the hard stuff as opposed to laying in bed in a depressive state of revolt at the fiery tribulations.

Or, maybe it's that I want to have courage.  I want to look courageous as opposed to cowardly but then I heard this definition of Courage.

Courage- "to embrace the true story of one's heart"

And I realize, I'm not courageous at all.  I hate embracing my story.  When I try, it's painful and I feel like I'm wearing a pair of skinny jeans I was poured into and forgot to say 'WHEN'.  It's tru…

Insults and Inspirations

This post is all about random happenings the past few days.  We are gearing up for Sam's two marathon days in the hospital and I have a bazillion deadlines and I just can't seem to get feeling better.  In fact, this low grade, rotten feeling has been dragging on for so long, I don't remember what energy and health feels like anymore.  I hope this isn't my new normal.

Tonight, I had to run into the gas station after work to grab something and the clerk said, "Hey, do you have family in town?"
"Nope." I was not in the mood to converse with him or anyone else so I just left it at that.
"I had a reason for asking you know. Because I was going to tell you that there is an old guy that comes in here every night at the same time and he looks like your twin so I just thought maybe you were, well, twins. "

What the heck?  I know I look tired and run down but seriously...an old guy as my twin!  I had nothing to say to that and walked out.  What a pu…

Keeping on

We have found ourselves in a holding pattern.  Tomorrow, was to be Shelbie's bone marrow biopsy and Spencer's device check but the boys are working like mad men in the spuds and Shelbie is booked with work and a boy!  He's coming up from Utah to take her out.  So, of course, she can't cancel that for a bone marrow biopsy!  Priorities...wink, wink.

So, I gladly rescheduled the appointments.

As is customary, I find that I do better during the busiest of times than afterwards.  Having a little room to breathe means a little room to think and that seems to be when I have to work harder to cobble myself together.  There is something to be said about being able to ignore the messy thoughts and fears that get stuffed somewhere to the dark lobes of my barely functioning brain.  

And, by barely functioning, I mean...going to Walmart to get something urgent and then wandering the aisles for no less than 35 minutes until you dig through all the boxes of compartmentalized inform…

Compassion Fatigue

"The truth is, we thought he'd be dead by now and you could get back to your regular work schedule but he's not.   How much longer is this going to drag on."

Can you imagine hearing these words from a friend/co worker?  It happened to a close friend of mine that I work with, in reference to the fact that her husband has cancer and was given 6 months to live but 7 months later, he's still here and she is still missing work to care for him.

It took everything I had to not melt in a puddle of sadness, hearing those words that were so carelessly spoken to her.   In my friend's shaky but firm voice, she said, 'He's not dead.  He's just dying.  I don't know when it will end.  What am I suppose to do?'

I don't have any answers but I see this problem all around me.

I've been intrigued with this notion of dying but not yet dead...A few weeks ago, Spencer and I went to a ghost town in Montana.  We've been to ghost towns before but they …