Wednesday, September 28, 2011

My Holland

A little while ago, I posted one of my favorite stories called, Welcome To Holland.  If you missed it, go here to read it.  I think about 'Holland' nearly every day.   Yesterday as I waited in the car pool lane, I thought about all the things I actually like about My Holland. I'll admit, at first it was really hard to think about what I like about all this, in fact even the word like used in reference to our life with Shwachmans and all the other problems seems to be an oxymoron.

I dug around in my distant thoughts and came up with a short list of things I like about Holland.
  • I really like that since I lost my job, I have been able to be home with my kids again and take care of them and nurture them like I was meant to do.  I can't do it all, I don't want to do it all, I just want to be a mom.
  • My vocabulary has grown.  I no longer stutter when I say Immune Thrombocytopenia Purpura and I can spell it too!
  • I have become freakishly interested in the status of my kids' poop and other gruesome and disgusting bodily functions and can carry on an intriguing conversation without feeling one twinge of disgust or embarrassment!...I have to so I can gauge how their pancreas' and other such things are fairing.
  • I have discovered a whole new group of friends; famous and world renowned!  They are in the big league when it comes to doctors yet they aren't too big to take my calls, answer my questions and tell me that everything is going to be okay.
  • I have learned that courage is not just a feeling.  It's an act.  It's showing up for life when life is having a showdown with you.  It's being fearless as you sit in the infusion room and receive chemo with a bunch of other fearless, courageous people.
  • I have seen smiles and heard laughter when there was absolutely no good reason to do so. 
  • I have learned that I can't live without prayer and faith.
  • I have learned that when I feel all alone and no one seems to care or understand, I can stand alone because I have my Savior.
  • I have learned that when people say they want to be my friend and support me through this, they don't really mean it but it's a nice thought.  Our reality is alot for people to handle and I'm learning that that's okay.
  • I have learned that when people say they want to be my friend and support me through this, they really DO mean it and it feels really nice.  It doesn't happen often but when it does, it feels like a warm blanket.  We need to be more warm blankets for people.
  • My capacity to love has grown more than I could ever imagine.
  • I have learned that my thoughts are always more frightening than reality or maybe it's that I am stronger in reality than I feel in my thoughts.
  • I have learned that I may not deal with every hardship with grace, dignity and faith, but I have the tools and know how to get back to that place of hope.
  • I have learned that I am not like everyone else.  My thoughts seem to run deeper.  The little things I see people taking for granted are huge and monumental to me. The huge and monumental things to other people are merely molehills to me like ACT scores, GPA's and University Scholarships.  Learning at school is important but many more important lessons are learned in living life.
  • I have learned that I am never done learning.  I will forever be mastering new things.  The challenges and trials I had yesterday will pale in comparison to what I will be faced with tomorrow.  That thought is both exciting and daunting.
  • I have learned that my life is richer because I have been blessed with so many trials.
  • There is no doubt that God saved his very best spirits to send me...Shelbie, Spencer and Sam!
Finally, here in Holland, miracles happen every single day!  Not a day goes by that I don't see the holy hands of God in my little, crazy life.


Sunday, September 25, 2011

The Path

 "When you are on the path you will know it, when you are not on it, you will know it."  Tao of Lao Tze.  I have no idea who this guy is but I like what he says.  He goes on to say, "The process of living life allows you to feel as if you have found the path."

I like these thoughts.  I know that right now in this period of my life, I am not on the Path. Well, I am on A path but not the path I want to be on.  I'm on the 'crazy' path.   Incidently, did you know the word Tao means 'path'?  I believe we find our path because of our life situations.  Some of life's experiences are energizing, moving us effortlessly along, sometimes we find ourselves half dragging down the path. 

Dragging myself down some path is what feels familiar these days.  I have allowed myself to be consumed with the hard things this summer has dished out.  I realize that while I may not be depressed in the traditional sense of the word, I am definitely distracted by everything going on; unemployment and health problems.  I didn't realize how much these setbacks threaten not only my own physical health, sense of well being but my competence and productivity as well.  Recently I was validated when someone going through similar struggles mentioned the same side effects of late onset ADD.  Sometimes just recognizing the problem or having someone else recognize it, makes a difference in how I manage. 

Never before have I felt so disheveled.  It's really hard for me to deal with.  I am usually the one multi tasking my way to the next task, blowing through my to do list with ease and starting a new one.  When I speak, I use to make sense.  Now I just seem to talk in circles.  I can see it on the faces of people I am trying to communicate with they are just plain confused.  I usually notice these cues and say, "You have no idea what I am trying to say do you?"  They generally smirk and say, "No, not really." 

So, while my efforts to get back on the Path seem irrevelant and fruitless, I am still making the effort.  This week, I am going to try to tackle the week in a more organized and strict manner.  I'll let you know how it goes.  I have a lot to do this week in our little world of doctors.  I have to schedule appointments for all the kids to have their bi- annual Gastroenterologist check up done in Boise.  Schedule follow up appointments in Seattle and plan a special surprise for Spencer...more on that later!  I also want to start writing a few posts on the emotional stages of dealing with our genetic fruit salad. 


Wednesday, September 21, 2011

It finally hit me

While I sat by Shelbie's bedside on Thursday, once she fell asleep from the loading dose of pain meds they gave her to control the side effects, I did some thinking. Deep thinking.

When I was engaged, I read lots of books on marriage.  I wanted to be well prepared for what I was committing to.  When I got pregnant, I bought the bible for pregant women, What to expect when you're expecting.   I'm sure if you have kids, you know the book too.  When the first baby was born I bought the sequel, What to expect the first year.  I think I highlighted every page.  I read that book faithfully along with plenty of other companion books.  When they got a little older, I read books on teaching kids value, teaching kids to work, teaching kid the birds and the bees.  When my first experience with the misguided, brain malfunction teenage years began, I read books on raising teenagers.  When those tactics failed, I read books on the biggest mistakes parents make.  When diseases started cropping up, guess what I did?  I read.  I read everything I could get my hands on. 

The last few years, there's been a shift.  Things have gotten harder.  Health problems are getting harder to control and new one's are cropping up like dandelions.  This is going to sound really dumb but in the last month or two, I am realizing that the problems the kids have are not going away.  They are not going to get better.  I can't keep saying things like, 'When Shelbie is better....' 

In the back of my mind, I really believed that even though we have these bad things, they somehow weren't going to affect my kids like all the other kids we know.  We would be the exception, the mild case, life would never get any harder than it was 8 years ago and as long as I could manage the problems at that level, we would always be okay.  Call it denial, call it wishful thinking, call it faith, call it hope.  Doesn't matter what you call it, it wasn't accurate.  It was a great and creative way to get through the hard times, protect my brain from emotional overload but it is getting less and less effective as time marches on and things get more complex. I short changed myself with that concept I clung to because now that things are much harder, I think I should be able to manage as well as I did in the early stages and I am not very forgiving of myself when I can't make it all work out.   I don't want to go all doom and gloom on our situation because that's not accurate either. 

So, it hit me...the biggest transition I have ever faced in life, bigger than marriage, pregnancy, babies or teens, living with chronically ill children, and I have never once picked up a book, read an article or sought any kind of help to understand how to navigate through this!   We have this standard for ourselves of trying to 'look' normal to the world.  I  make excuses for why my kids don't play sports or can't do the same things other kids can or why, at 1:00 in the afternoon Shelbie is still not out of bed.  I feel dumb when people find out I let them eat whatever they want, whenever they want even if it means I am making them a meal at 11:00pm.

It's time to accept that this is a foreign land and I don't know what I'm doing.  I am going to be real...not Polly Anna, pretending like everything is just fine.  I have already started collecting books and articles on dealing with the emotions of caregiving and chronic illness.  It has been enlightening, heart warming.  I'm really not going crazy!  I read that and jumped for joy.  Ahlzeheimers is not setting in early and I haven't developed a bad case of ADD.  It's the stress of all this that makes me feel like I'm falling apart most of the time.  Do you know how happy that made me?  There are enough people feeling the same way I am that they had enough material to plan big research projects and write books about the tired, cranky, caregiver....ya know...not really but that's what I feel like. 

So, this new adventure begins.   Learning how to be a different kind of mother.  Learning to be more accepting, more loving towards a disease that is stealing away my time, quality time with my kids.  Learning to love this life.  Rejoicing on the good days and being humbled and grateful on the bad days. I am determined to figure this out. It has been and will continue to be an intense period of growth and big dose of reality. 

Sunday, September 18, 2011

Mitochondrial Awareness Week

This week is International Mitochondrial Awareness Week.  If you are like me, you've never even heard of the disease.  You might remember hearing the word 'mitochondria' from biology class back in the day but maybe not...I didn't.  When doctors started playing with my kids in the mito arena, I started feeling a little uneasy but at the same time, knew they would probably find some problems and sure enough they did.

Mitochondrial problems for us are secondary to bone marrow failure; at least for now.  We started the mito cocktail just a couple of months ago but haven't seen huge improvements yet.  Our doctor said it could take awhile.  I am still learning about the process of this disease and have only dipped my toes in the deep waters of the mito world.  Part of me just doesn't want to know but the other part wants to know all I can. 

A couple of months ago, I joined an internet support group for mitochondrial disease and lurked in the shadows as I read about other families stuck in this mito mess.  Truth be told, I completely expected their experiences to be totally different from ours and I would breathe a big sigh of relief and say to myself, "they can't possibly have this disease, we are nothing like them."  Well, turns out we are very similar to them.  My kids are not nearly as sick as some kids out there fighting mito disease but we have our days. That discovery was both discouraging and comforting.  I dared to post a message, our story and again was surprised when I was met with such support and encouragement and some of the feelings I have kept hidden and isolated were validated and I am not as crazy as I feel sometimes. 

So, as you go about your week, whether you donate to the cause or not, just remember how lucky you are to be able to get up in the morning, knowing you can physically get up in the morning.  Take a moment to feel the energy you have whether you want to use it or not, it's there.  Appreciate your body, all that it does everyday that brings a richness and quality to life.  Remember to live a little more, exhaust each moment you have, give thanks for everything- the good, the bad and the ugly. Keep your family close and don't forget that everything else in the world pales in comparison to the love of a family. 

Plan a strong week, make a great week!  If you want to understand more about mito disease, go here.  Mitochondrial disease may never affect you or your own family but understanding what others go through helps us be all around better people, more loving, more helpful.  

Friday, September 16, 2011

The Great Alarm

'The moment of great alarm'...this phrase has been rolling through my mind like a wall street ticker tape.  I've heard before and understood the context in which it was stated but I got to wondering what it means to me.  Webster defines 'Alarm' in these ways...

1. a sudden fear or distressing suspense caused by an awareness of danger; apprehension; fright.
2. any sound, outcry, or information intended to warn of approaching danger: Paul Revere raced through the countryside raising the alarm that the British were coming.
3. an automatic device that serves to call attention, to rouse from sleep, or to warn of fire, smoke, an intruder, etc.
4. a warning sound; signal for attention.
At first, I have felt that for me it means the moment when all my resources have been saturated , I am used up and I have nothing left but panic and there never seems a shortage of that.  The entire summer has been packed with back to back messages of bad news.  Overwhelming and astounding problems have been uncovered and it has been alarming to me.  'Distressing suspense' pretty much says it all.
The more I thought about the alarm we are facing, perhaps it's not all bad.  Knowing that the kids are faring worse than we originally thought is actually good thing.  Knowledge is power.  Information allows us to prepare ourselves for what lies ahead and at the end of the day, that's a good thing.
While I am still feeling my way through this 'new' way of life, it is discouraging, disheartening and difficult.  I feel isolated even when I'm surrounded with people...friends.  My life is so far from anything that resembles 'normal' and I can easily feel like a foreigner in my own familiar world.  Any comfortable pattern of living I once had ceases to exist. 
We have been in crisis mode since June and shifted into survival methods since then.  I can see that now, it is time to regroup.  Pick myself up, dust off the kids, buy some yellow balloons (like the cheesy mother song said I would do when I became a my last post)
Yesterday and today have been somewhat of a turning point.  I'm not exactly sure where I am turning to but it's time for a change of something...perspective maybe?  I have done a lot of soul sifting, reading, trying to make sense of where I am and I have reached some interesting conclusions which I believe I will use this blog as my 'platform' for working this out...the nuts and bolts of being the caregiver of three chronically ill children.  There's not a lot of help and understanding for people like us.
More to come on that...In Shelbie news, the IVIG infusion was rough!  Not as long but lots of reactions, pain, nausea, discomfort.  Today and tonight have been the worse of any infusion to date.  I think it could be partly because she got the bad cold I started the week with, she is weary of this battle and the IVIG is so hard on her body.  All those factors have made for a pretty crummy day.  In my last-ditch effort to stay out of the ER tonight, I ran to Walmart ( a store I am really beginning to hate) to get an assortment of cold packs and more OTC pain meds.  The cold packs have taken the edge off the meningitis-like headache and she finally fell asleep.  I really hope she can get some rest tonight.

Wednesday, September 14, 2011

Would you rather...

A.  Go for a root canal
B.  Have bamboo placed under your fingernails
C.  Endure an hour of Chinese water torture
D.  Sit at the hospital for 12 hours while you watch your daughter endure the horrible side effects of
       Plasma transfusion
E.   The first three- A,B &C

The correct answer is 'E'.  Enduring the top three feels much more do-able than 'D' but that's what's on the docket for tomorrow...or today...depending when you are reading this.

I don't know if I'm just tired or what the deal is but I would do anything to not have to go through this.  It sounds awfully selfish since I'm not even the one having to be put through the wringer for 12 hours or so.  I'm just the mom...the mom who is tired of 19 years of watching her kids go through hard things without an end in sight. 

Each hospital visit, each doctor's appointment adds more and more dread to my day.  It's a rut I am not happy being stuck in.  It's a sad feeling.

Growing up, who doesn't dream of being a mom?  I remember a song I use to sing this totally cheesy song...

When I grow up, I want to be a mother,
And have a family, one little, two little, three little babies of my own
Of all the jobs, for me I'll choose no other! I'll have a family
Four little, five little, six little babies in my home."

"And I will love them all day long, and give them cookies and milk and yellow balloons. And cuddle them when things go wrong, and read them stories and sing them special tunes...

Sweet isn't it?  Maybe too sweet but still, part of that fairy tale included dress ups and dance class, violin lessons, piano lessons and cheerleading.  T-ball, soccer and boy scouts.  Sugar and spice and all things nice, snips and snails and puppy dog tails.  I'm pretty sure my vision of motherhood never included bone marrow failure, blood transfusions, chemo therapy or a failing pancreas.  Mitochondrial defects, shortened telomeres or immune deficiency.  I don't recall signing up for sleepless nights and long days at the hospital or late night emergency runs.

Well, such is life.  I am trying to love the life I have and for the most part, I do.  We are really blessed but I have this really bad habit of being human.  Yup, being human comes with challenges like fear, worry, depression...the list goes on and there goes my love for life sometimes.  I am sort of stuck in one of those times...

Sunday, September 11, 2011

I like to believe

I like to believe that I am super human.  I like to believe that I can do it all.  I like to believe that I am always on top of my game.  I like to believe that I always do my best.  I like to believe that I am someday going to make 'Mother of the Year'...not on a global level of course, just in my heart.  I like to feel like it is an award I am worthy of.  I want to feel like I can really do this whole motherhood thing and do it well. 

I like to believe that I never have a bad day.  I like to believe that no matter how rough the road or tough the adversity, I always see the positive.  I like to believe that I never get frustrated or feel hopeless.  I like to believe I have faith that will withstand anything. I like to believe that I am on the right path.  I like to believe that no matter what, I can find the joy.  I like to believe I know who I am, I know whose I am. 

This weekend as been a little unbelievable! I guess I have taken the news of Shelbie a little harder than I let on, even to myself.  Friday night's ER visit with Spencer was another disheartening blow to my un-believable weekend.  Saturday, the drama continued with Shelbie stepping on a rusty nail.  If I had normal kids or even back in the day when I believed, in ignorance that I had normal kids, I would clean it really good, take her in for a tetanus shot and that would be the end of that story.  But I don't have normal kids, I have Shelbie, Spencer and Samuel.

 What do you do with a kid, a rusty nail, no immune system and a virus that calls my daughter home?  Will the tetanus shot even work?  Will it cause her to get the disease since it is a live vaccine because her immune system will not bother fighting it?  If I don't give it to her, will she get the disease anyways?  More questions than answers I'm afraid and no local doctor well versed enough to supply me with answers so, I've been doing a lot of praying that nothing will happen to her until we figure it out. 

I like to believe I know what I'm doing to take care of my kids but truth be told, I believe I know nothing.  This whole chronic illness thing?  It's draggin on, draggin away any belief I ever had that I can do this.  And while my inner critic tells me I should censor this and leave you with something positive to think about, well, not tonight.  I guess that's okay, I'm not giving up though I did receive an email whose subject line read, "Know when to give up" gave me permission to do just that, I am just going to sit where I am and let these feelings be.  Tomorrow's another day and I'm sure things will be much brighter.  You know how fast things can turn from bad to great around here.

Friday, September 9, 2011

Now we're getting somewhere...

Finally...our immunologist from Seattle called this morning!  It's one of those things that is so complex and again I was told that there is so much water under the proverbial bridge, it's hard to pin down, "without a shadow of a doubt" what is going on but we have a good start. 

Shelbie has very low titers to her immunizations and her pneumonia titers are nearly non existent so that was scary news especially since we are headed into winter and flu season.  I talked about this virus that keeps morphing into one thing or another and our doctor wasn't surprised after seeing her labs and other results.  Even though her immune numbers are low but still within normal ranges, they are just not functioning normally.  That has been the hang up all along.  Most docs look at the numbers then scratch their heads as to why she is still sick all the time, they haven't considered the function of those numbers. 

So, the short story is that Shelbie has Primary/secondary Immune Dysfunction.  She will have it her entire life and it will get worse when she has chemo which we haven't seen the last of that either but that's another story for a different day.  The only treatment for PID is immune globulin infusions or IVIG every 3-4 weeks forever. 

    Here's how it all breaks down..
12The number of infusions Shelbie needs each year
12the number of days we will spend sitting around in the hospital
20,000the cost of one infusion
240,000the cost of treatment for one year
365the number of sleepless nights I have to look forward to as I wonder what the insurance company is going to think of this.

             Good morning sunshine...wake up and smell reality! (referring to myself of course...)

Spencer did not escape unscathed either!  He hardly has any immunity protection from his childhood immunizations and his pneumonia titers were extremely low as well. NO surprise there since he has already battled pneumonia more than once.  He is on schedule to receive a pneumonia shot then retest titers.  If he doesn't show more protection from the new immunization then they will begin talks on starting Spencer on IVIG too!  That means, take all those numbers I listed above and multiply that by 2.  It's inconceivable in so many ways, I can't even begin to express the way my mind is swimming, drowning, in the possibilities. 

Sam...well he is doing the best from an immune standpoint.  He is lacking titers of his chicken pox so let me know if anyone out there has the chicken pox visiting their house...I would rather just get this childhood disease over with!! sigh....


Thursday, September 8, 2011

Keep Your Fork

Last night, I helped a friend present a RS lesson on repurposing.  I took my latest treasure, an old screen door.  I am using this door as our family vision board.  It's a work in progress and I will post more over at Inside Story at a later date.  Anyways, I got our family motto printed back up and taking front and center in our vision board. 

What is our family motto you ask?  It says, "Keep your fork, the best is yet to come".  I use to have this statement stenciled on our kitchen wall but when I repainted, the quote disappeared and I haven't put it back up.  There's a story behind this quote and it is one of my favorites so I thought I would post it here.  I think it may become one of your favorites too...

Keep Your Fork... the Best is Yet to Come

  There was a woman who had been diagnosed with a terminal illness and had been given three months to live. So as she was getting her things "in order," she contacted her pastor and had him come to her house to discuss certain aspects of her final wishes. She told him which songs she wanted sung at the service, what scriptures she would like read, and what outfit she wanted to be buried in. The woman also requested to be buried with her favorite Bible.

Everything was in order and the pastor was preparing to leave when the woman suddenly remembered something very important to her. There's one more thing," she said excitedly. "What's that?" came the pastor's reply. "This is very important," the woman continued. "I want to be buried with a fork in my right hand." The pastor stood looking at the woman, not knowing quite what to say.

"That surprises you, doesn't it?" the woman asked. "Well, to be honest, I'm puzzled by the request," said the pastor. The woman explained. "In all my years of attending church socials and potluck dinners, I always remember that when the dishes of the main course were being cleared, someone would inevitably lean over and say, 'Keep your fork.' It was my favorite part because I knew that something better was velvety chocolate cake or deep-dish apple pie. Something wonderful, and with substance! So, I just want people to see me there in that casket with a fork in my hand and I want them to wonder "What's with the fork?'. Then I want you to tell them:

"Keep your fork... the best is yet to come."

The pastor's eyes welled up with tears of joy as he hugged the woman good-bye. He knew this would be one of the last times he would see her before her death. But he also knew that the woman had a better grasp of heaven than he did. She KNEW that something better was coming.

At the funeral people were walking by the woman's casket and they saw the pretty dress she was wearing and her favorite Bible and the fork placed in her right hand. Over and over, the pastor heard the question. "What's with the fork?" And over and over again, he just smiled.

During his message, the pastor told the people of the conversation he had with the woman shortly before she died. He also told them about the fork and about what it symbolized to her. The pastor told the people how he could not stop thinking about the fork and told them that they probably would not be able to stop thinking about it either. He was right.

So the next time you reach down for your fork, let it remind you oh so gently, that the best is yet to come. Friends are a very rare jewel, indeed. They make you smile and encourage you to succeed. They lend an ear, they share a word of praise, and they always want to open their hearts to us.

~ Author Unknown ~
It's such a great reminder when things get hard and heavy around here that something better is around the corner, down the road, at the end of the tunnel....Yet to come!

Tuesday, September 6, 2011

Something to ponder

Hmmm...what would you do?  Tonight, Spencer had to type up a paper for school. He got busy and I went up to tuck Sam in and play the piano.   When I came back down, he asked me to read it and show him how to work our printer that has had a mind of it's own lately. 

It was the weirdest thing to read.  Some of his words were typed with all the right letters but in the wrong order so for instance the word 'academy' was spelled, 'acdemay'.  At first I thought he just didn't know how to spell the word but in looking at the misspelled word, it isn't even spelled phonetically. If he didn't know how to spell, I would have expected something like 'ackadamy'.  He told me it was 'academy'.  I pointed out that he had spelled it wrong and he said, "No I didn't." and he spelled the word back to me.  He knew how to spell it.  I showed him again, that is was spelled wrong and he read it on the screen and said, "No, that's right.  I copied it straight from the board too so I know it's right."
"Spencer, those letters are mixed up, do you see that?" I asked
"No." he replied
"Ya, they are.  Do you think you have dyslexia?" I asked
"Yes, I do." he simply stated.
"Ok, well has it always been a problem?"
"Yes, but just leave it alone, I'm fine." and he headed up to bed. 

It doesn't really come as a surprise if he does have dyslexia since Sam has dyslexia and dyscalculia but how did I miss this after all these years of school?  The more I think about it, the more I can look back and see how much he hates reading and has always struggled with reading and spelling just like Sam does.  He has also avoided typing at all costs.  He wears glasses and is always complaining that he still can't see even the day he gets a new prescription in his glasses.  Maybe he has been trying to describe 'not seeing' in terms of dyslexia rather than 'not seeing' in terms of blurry vision. 

I will have to take this issue slow so he doesn't feel like one more problem is being added to his list of ailments.  Maybe, he doesn't have it but it seems a little strange to me...what do you think?

Steering the river

This morning, I had to drive my friend down to the city for a doctor's appointment.  Her doctor had such a nice quote painted on his wall.  It was a good reminder for the start of another week requiring a great deal of patience. 

      "Time is a flowing river.  Happy are those who allow themselves to be carried, unresisting,  with the current."                             
                                            Christopher D. Morley

Ironically, while I sat there staring at this quote, a nurse from the Immunology department at Seattle Children's called me.  I have been trying to get ahold of our doctor to see if she has any test results from June and if she had any insights into fixing Shelbie's infection.  The nurse said, "Just so you know, it takes anywhere from 6-12 weeks, sometimes longer to get tests back so there is nothing yet to report on."  Three months!!  Good grief!!  I told her I at least wanted a conversation with the doctor so she could advise us further on what to do.  The nurse didn't sound like that phone call was going to happen anytime soon. 

In the meantime and in between...we wait.  Shelbie is still about the same.  The virus moves from her eyes, to her sinuses and back into her eyes.  It's the virus that never dies...

Friday, September 2, 2011

My dream job

Yesterday, while the radiology tech was mixing the contrast for the CT scan, I inquired about who the radiologist was that would be reading the scans.  She told me the name and I flipped.  I told her to forget it, we would come back when a different Radiologist was on duty.  She didn't even argue with me which I was expecting.  Unfortunately, this particular doctor was on duty the remainder of the week!  When she told me that, I said, "Well, that's fine but I'm afraid we will have to go elsewhere for the scans because I refuse to deal with that doctor."
She replied, "I understand.  You should know that this is his last week here, the hospital has dismissed him."
"It's about time!"
"We understand but we hate to lose your business." 
In my opinion, if a hospital is going to continue to employ people who have had countless complaints filed against him, they are going to continue to lose business.
She was really nice and called over to another imaging place to see if they could send the hospital scans to another facility to be read by the doctor of my choice.  That actually worked and that is what happened.

So, here is my dream job...maybe not my dream job but I would love to meet with doctors on a monthly basis to bring to their consciousness all the dumb things they do that creates doubt and angst in their patients, their bedside manner, their staff...  It could make them better providers, increase their business.  There have been two horrible, awful, awful doctors practicing at our local hospital.  I spent a year trying to convince the CEO personally, in face to face meetings that one particular doctor needed to be fired.  I had volumes of offenses this man had done including sexual harrassement.  I was brushed aside and for years, this doctor kept practicing until his errors and dishonest character caught up to him and they finally fired him.  A little late and I know the hopsital lost patients because of this man. 

Now, this Radiologist.  I made another complaint years ago against this doctor.  Ask any other doctor in town about this Radiologist and they will all agree he is useless and actually makes huge diagnostic errors.  Again, for years the hospital has tried to ignore the problems.  Finally, they have come to the light.

 See, we use so many doctors and services, I could be a 'secret shopper' for the hospital.  Give them feedback on the service they provide.  I think it's a great idea.  I would do the same for doctors too.  I have quit doctors just because of their receptionist.  They might not think it's a big deal but it's huge!

Thursday, September 1, 2011

Land of the free...home of the brave

Yes, America is the land of the free and I think I just realized what the part about the 'home of the brave' means.   Brave is what you have to be when the insurance company says you can't have the one and only treatment that will make you better.  Welcome to America and the crippled healthcare system. 

We got results of the CT Scans today and Shelbie has a severe virus and as long as she has no working immune system, she will have this virus.  The doctor said that the longer the virus hangs in there, the higher her risk for a bacterial infection or fungal infection so she is not out of the woods by a long shot.  We are celebrating the fact that it is not a funal infection!   We do have one other reason to celebrate...September 1, our insurance company changed their pre- auth policy on radiology. 

Remember a couple of posts ago, I said I had a nagging feeling not to wait to take her to the doctors?  Well turns out Wednesday was the last day to have radiology done without a prior preauthorization.  Today, they would have had to pre-authorize the testing and what the doctor wanted was pretty extensive and not the usual, customary tests so most likely would not have been approved under the circumstances.  So, despite today's setback, I am feeling pretty blessed.  

Our team of doctors in Seattle and our team here, have been working together and it is agreed that the IVIG infusion is her best bet.  The last one brought her a week and a half of relief but as soon as it left her system, the virus flared up.   Technically, our insurance company said she can have it on the 12th of September but not until.  Since I don't have $25,000 of spare change laying around, we will have no choice but to wait.  Of course, there is always a chance that an act of God will change their minds and it's happened before so I guess we will try to be patient. 

It's been really hard for me to remember that God doesn't give us any problem that doesn't have a reasonable solution even if that solution can not yet be seen.  He has blessed me with these kids who all have special needs so he will also bless me with the means necessary to take care of them.   I can't see how that is going to happen right now but judging what God can and can't do is pointless and will get us nowhere.  The doctors keep telling me that a virus has a life span and eventually it will die off on it's own.  That's great but I can't help but wonder how long 'eventually' really is.  It's obviously longer than two months.


It's the Most Wonderful Time of the Year!!

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