Sunday, December 30, 2012

And then they're gone!

One minute you are enjoying the company of a really great person and then next day they are gone, just gone!

I have had the great privilege and blessing of taking care of my sweet neighbor for the past several months.  She has been a blessing and a light in my life but today, she passed away.  Was it expected?  I guess some may argue that it was but I wasn't expecting her to pass away.  I always thought she would be here forever, one of those things that never changes, a permanent fixture in my life.  

Three weeks ago, I had to call the ambulance to take her to the hospital.  I stayed with her everyday she was in the hospital.  Two weeks ago, she was moved to the nursing home and I stayed with her there every single day.  I straightened her blankets, gave her hand massages, ran her errands but most importantly, I showed up because she loved me and she made me smile. Call me selfish.

We had so much in common even though there was a 30 year age difference.  Carma always had something funny to say even when she was in pain and not feeling well.  She had nicknames for everyone and I loved the ones she picked out for my kids.  Shelbie was lovingly referred to as Shorty, Sam was '4 legs'.  Spencer was always that boy with the red hair.  We loved being with her.   Whenever we left her room, we would say goodbye and she would say, "Not goodbye, see ya later."

Carma was full of all sorts of funny stories.  The last few days before she went to the hospital, she had me gather up all her jewelry and I spent one entire evening listening to stories about each and every piece and what it meant to her.  She had the best stories and a wonderful sense of humor.

At Thanksgiving a good friend of hers died unexpectedly.  He was well loved and admired in the community and she was deeply affected by his death.  She said to me late one night, "You never really know the impact you made in this life until you die.  I hope that I have made some kind of difference in the life of someone by the time I die."  Well, she made a difference to me and I was able to tell her that just this week.

Tonight I am sad.  I can't believe she's gone.  I've been a little lost wondering what to do with my time today.  I usually spend Sunday evenings in her room at the nursing home.  I wanted to go up there just because but I didn't.  This week will be hard.  The kids will be gone to the wasbands for New Years and I will have no one to take care of.

See ya later Carma...


The problem with denial

As you know, I am the queen of denial.  I tend to think if you just ignore it, it will go away.  That works most of the time but then at some point, all the things you've been ignoring catch up to you!  Dang, I wish I could remember that part of the denial formula...

This week,you know what sort of it the fan.  The kids are falling apart and it's my fault.  So, now we get our act together and try to catch up on all this stuff.

We have cavities to deal with, infected wisdom teeth, swollen joints,  wrecked shoulders,  breathing problems and that is just to name a few.  The kids are all complaining about their teeth hurting.  Even I have tooth problems.  I put mine off because I don't have insurance and you can't even sit in a dentist chair without having to pay half a million dollars just for sitting there.  I know I probably need a root canal.  Today I have shooting pain in my jaw and it's hot to the touch.  I am guessing I have an infection.  I am hoping to get by with Advil until the nerve completely dies and then I won't have anymore pain...sounds reasonable right?

Spencer got sick the day after Christmas and he has been dealing with a bad sore throat among other things.  His temperature started dropping on Friday.  Did you know that a low temperature is just as dangerous as a high one?  His dropped to 96 degrees.  Sometimes, your body responds to viruses and bacterias by lowering the body temperature.  If it gets to 95, it's considered a medical emergency.

Shelbie is having a hard time walking because her knee is so swollen.  It's been this way for well over 4 months!  I just kept thinking some ice, heat and Advil would fix it.  I guess not.

Still waiting for Sam's surgery date.  It feels like I am waiting to have a baby!  There is this anticipation, anxiety and of course trepidation and nesting.  I have been making freezer meals, cleaning the house and getting things ready in case he ends up being in the hospital longer than anticipated.  Right now, insurance companies are fighting about who is responsible to pay for it since he was injured on school property.  I don't know how long things will drag on but in the meantime, he is not a happy camper.

I have been slammed with my AS (Ankylosing Spondylitis) problems.  This past week, I had to go to the Urgent Care late at night to get a shot for pain and inflammation.  I couldn't even breathe let alone walk.  It helped but things have definitely progressed and it upsets me. I saw my Rheumatologist last week and he confirmed that things are getting worse.  He is trying really hard to get the pharmaceutical company to sponsor me so I can get the weekly injections or monthly infusions to put this disease in remission but it's a long shot.  I don't want a life of injections but I don't want to live in a wheelchair either.  Oh well, what will be will be.

So, medically speaking, another busy, busy week.  I just want to get Sam's surgery done and I'm running out of patience!

Tuesday, December 25, 2012

So, I was thinking...

You know, thinking is dangerous!  There should be a sticker on your brain that warns of the hazards that come with thinking.  I really shouldn't do it, but in an unguarded moment, I decided to do some thinking.  I know, scary!

So, I am pretty anxious about Samuel's upcoming surgery.  I am really worried that he is going to have a relapse of C-diff.  The last time he had surgery, C-diff almost killed the poor kid!  The doctor was just a few hours away from thinking he would have to tube feed him and life flight him to Boise!  It was a miracle that he pulled out of that but it wasn't until he had spent 2 weeks in the hospital and 6 weeks laying on an air mattress at home because everything had to be washed down several times a day with straight bleach!  I really don't have the energy to manage that again!

I am waiting on the insurance company to approve the surgery and then it will be done.  The doctor is hoping for later this week but I am thinking that realistically, it will be the middle of next week which means a new year, a new deductible.

We have a deductible and co insurance of $11,000.  I am estimating Sam's surgery to be somewhere around 40 or $50,000 though this is probably a low estimate.  Shelbie will have her plasma transfusion next week as well and that is another $15,000 or so and then I will buy our usual monthly prescriptions that average around $1600.  So, before the first week of January is even through, it is likely that we will have racked up a $67,000 medical bill!  Is there any part of this that sounds scary to you?  It terrifies me!

Just because the insurance company approves something isn't a guarantee they will actually pay it!  I worry everyday that for some odd reason, they will just stop paying and all this will be mine!  The deductible is bad enough.

When I start thinking about all this, I can't believe this is really happening to us!  It's unbelievable and overwhelming!  So, I've decided it's best not to think...about anything!

Thursday, December 20, 2012

Worse than expected

Today, we met with the surgeon to discuss Sam's knee.  All day yesterday, I kept feeling like Sam would not need surgery and the doctor would tell us that it would heal fine on it's own.  All through the night, I kept having the same recurring dream that Sam did not need surgery.

Well, I don't know what all that was about but Sam needs surgery!  The doctor looked at his knee, tugged on it, moved it around and said, "We will schedule surgery, there's nothing left to this knee."  THEN...he looked a the MRI and confirmed that the inside of his knee is shredded!  Shredded!!!, not just torn!

He went on to tell us that not only will he need surgery but his knee will have to be rebuilt.  Yes, rebuilt!  Not just stitched up a bit here and there but rebuilt!  (Do you love all the exclamation marks?)  We discussed two different methods of fixing it but they each require some spare parts like ligaments and tendons.  We could use cadaver parts but in the end, we decided it would be better for Sam to use his own parts.  There is less chance of the tendons failing if we harvest what we need from him but that means more pain for him.  It was really hard for me to decide, really hard!!!  I wish it didn't have to come to this.

The plan for now is to use parts of his hamstring and a portion of his patella to use as a bone graph.  They will be drilling holes in his tibia and femur and looping tendons through and attaching with pins and screws.  The doctor said it's a 6 month recovery time and after 12 months, he should be good as new.  Part of the trick to this surgery is that he still has a lot of space in his growth plates which means he is due for a growth spurt, whatever they do to his knee has to be able to grow with him or else one leg will be significantly shorter than the other.  Because of that, he will have to do the more extreme surgery which takes longer to heal.

I kept looking at Sam trying to read what was going through his mind and I wasn't even sure he was processing it all.  I was preparing for an emotional disaster the second we walked out of the room but he did fine.  Well, he did fine until we got home and I asked him to start his homework, then, he melted to pieces.  Poor kid.  I know he is scared and angry and all that.  The doctor let him know that this is going to be a slow and very painful procedure!  Ugh.

We don't have an exact date for surgery yet, we are waiting on pre-authorization but the doctor is hoping that will come through by the middle of next week and then he will get him in as soon as he can.  He will be laid up for at least 6 weeks and then start physical therapy.  He might be able to do a slow jog at 3 months but nothing else.  At 6 months, he will evaluate him to see if he can get back to gym and parkour but it will be limited and he will be in a brace for a full 12 months!  It's pretty shocking because my head had already convinced myself that surgery wasn't going to happen.   There is a miracle in all this though, Sam has only had one pain pill since this happened just over three weeks ago!  Amazing!  He is amazing.   I have some serious worries about surgery but I will save that post for another day.

Sunday, December 16, 2012


“At the temple there is a poem called "Loss" carved into the stone. It has three words, but the poet has scratched them out. You cannot read loss, only feel it.” 
― Arthur GoldenMemoirs of a Geisha

I love this quote by Arthur Golden.  I would be hard pressed to describe in words how I feel as this year closes in and another one just about to begin.  Loss is a good start and the more I think about it, you really can't read about loss, you really can only feel it.  It is a heavy feeling that runs it's threads of emptiness throughout every piece of your life.  It finds each little corner and sobers it's edges and settles in just a little.

We have suffered many losses over the past year.  Some, you have read about here, others, you may have heard because of your proximity to me but then there are some that I have kept to myself and carried alone; losses that have felt too heavy to even dare to share.

I feel like I have become a part of the walking dead half the time.  Tired.  I go through the motions, I smile when it's appropriate, ramble on when it's expected, then fill up my time, every second of my time with things to avoid thinking and feeling the losses.  I am already a fair distance away from this year, already escaping into next.

People usually feel the loss when something is gone.  It's strange to stare it down before anything has completely disappeared.  It's like a picture of something fading ever so slightly, vanishing one piece at a time and there is nothing you can do to stop it.  I think this is the hardest kind of loss.  I look at my kids and remember when the biggest problems we had were a random fever every now and again.  There were a couple of good years when everything was status quo.  I miss those years.  Now I look at them and see the little parts and pieces that no longer work, or are just plain breaking down.  Everyday, there seems to something else fading away.  That is loss.

My close friend is in the hospital and every day, I see her fading away and I want to sit her up and shake off the chronic fatigue and confusion that has veiled her body and watch it flutter off and away but instead, I watch the crudeness of life take it's toll.  That is loss.

Sometimes, I daydream and wonder what life would be like with the usual problems and stresses that get to people but then I remember, I do know what that feels like, I'm not exempt from the usual and customary hardships just because I got signed up for the chronic illness path.  There are days when I can't imagine having to go through one more day of this!  Then again, there are days when I wouldn't trade it for anything.

Among the loss,  there are lessons learned.   Things I wouldn't have learned any other way than the way they were taught.  I am more laid back than I use to be.  I make better use of my time.  I have learned that the house doesn't have to be clean and spotless everyday and laundry will still be there tomorrow or the next.  No matter what I have to do in a day, there is always time to help someone. Heaven forbid I ever become too absorbed in myself and my own trivial life to stop caring about others or worse to just not have time for them. Time is the difference between regret and blessed. Christmas neighbor treats that were once so important, seem to be a little less pressing this year and time with my kids I've learned, is time I want to relish in.  So, I guess like everything else in life, loss comes and may sit awhile on the front porch of your life but in sneaks contentment and that's okay.

Wednesday, December 12, 2012

It's raining, it's pouring...I wish I were snoring...

When it rains, it pours and snows and gets a little foggy too!!  What a day!  Here's how it started...

6:00am run next door to make sure my sweet neighbor is okay.  She is dying from congestive heart failure.

6:30am jump in the shower

7:00am say good bye to Spencer has he heads to early morning Seminary.  He is limping and in excruciating pain.  Oh ya, I remember he told me he wiped out yesterday skiing.  Oh well...see ya later Spence.

7:15 am wake up Sam to help him into the shower and get ready for school.  He made a good attempt but then I was met with weeping and wailing and gnashing of teeth; make a bed for him on the couch beside Shelbie.

7:25 am  run next door to check on my neighbor...not good.

8:00 am run the neighbor boy to school

8:15 am run to Walmart to get some things for my neighbor

8:40 am run home because I found out I have to have Christmas presents in the mail by noon so they can be overnighted to my parents so they can transport them to Canada with them.

8:45 am feverishly start making Christmas presents for my family.

9:15 am neighbor calls, can't breathe, can't over

9:20 am call for an ambulance

10:00 am  at the hospital with my neighbor

11:30 am  check in with the kids, everyone is in pain and not doing well.  I tell them to come up to the hospital for lunch if they want.

12:00pm kids arrive, we eat quickly then head back to my neighbors room.  We laugh and entertain her with our unique brand of humor.  Spencer finds this number called the 'Daily Life Check' and calls.  It's hilarious!  It is a recording that tells you with 100% certainty if you are dead or not.  They ring three bells, if you hear them, you are not dead!!  It was side splitting fun!  My neighbor laughed.

2:00pm kids are home napping, still at the hospital with neighbor.  Doc calls to report on the MRI of Sam's knee.

3:15 pm leave hospital to pick up another neighbors son from school.

3:45 pm home to break the bad news to Sam!

Crazy day even by my standards and I'm the poster child for crazy!  Sam has multiple fractures on his knee and a torn ACL!!  It also looks like cellulitis is setting in so we are off to the docs tomorrow to make sure we get any start of infection under control.  We will also see an orthopedic surgeon soon to figure out what to do next.  They will decide if they try to give it time to heal on it's own or if they will go ahead with surgery.  Surgery is a just another can of worms I don't even want to open yet!  I will save my worries about that for another post.

To say that Sam is upset is an understatement.  He was throwing things including his crutches and banging his fists on the couch.  He loves his parkour more than anything!!  It is his passion!  He won't be back in the gym for months.  It didn't matter what I said about everything being okay, it didn't matter what I promised him...movies, treats; whatever else fell out of my mouth in a weak effort to calm him down.

Spencer is in more pain so he too will go to the docs tomorrow for x rays of his rotator cuff and knee. When we were walking to the cafeteria at the hospital, we looked pathetic, like the walking wounded in a MASH unit!  What in the world has become of my life?  Surely this can't be happening?  Is it?  I fear it is...I will die if Spencer needs surgery too!  What kind of luck is that?

Needless to say, I didn't get any Christmas presents all.  Not even a valiant start.  Oh well.  Life goes on...


Monday, December 10, 2012


Sam is my little metaphor for life these days.  When his accident happened, he had a pretty good attitude.  He didn't complain about the pain or the crutches that are really too short.  He was courageous and had a lot of energy both physical and mental.  Now that things have been dragging on for 6 days or so, he is wearing down.  He is exhausted and the pain is really starting to make him cranky.

It's kind of like life.  We get slammed with a trial but we feel hopeful and confident that we will have the stamina to face whatever comes our way.  We start out great.  We are cheerful and happy and people can't believe how positive we can be in the face of opposition.  Pretty soon, what we thought was only going to be a trial for a month or two ends up being a little longer, like forever let's just say.  The happy countenance gets a little tarnished and confidence takes a bit more effort.

Tomorrow, Sam has his MRI at the hospital...surprise, I guess they do in fact do MRI's at the hospital! (remember the dumb ER doc that told me she couldn't do one last Thursday because they don't do them there?) I am glad that we will be able to find out if he will need surgery or not!  I am the kind of person who just needs to know.  I don't care really if he needs surgery or not, I just want to know.   You can prepare for things better when you know. I am cautiously optimistic that it is just severely bruised but not torn.  The swelling is no better today than it was on day one.   There has been no change at all, not better but not worse either.

I can't remember when he said it but just matter of fact, not a hint of emotion and completely out of the blue, he said, "Well, I can't believe my career is over, now what?"  I tried not to smile because seriously, a career out of doing wall flips?  But then I realized just how happy he has been going to gym twice a week for his parkour classes. He and his best friend D were hoping to be able to teach the class next year!  I think he really did believe this sport would become his life.  Poor kid.

Stop the presses...I take back everything I just said about being hopeful that it is nothing serious.  We just took the compression stocking off, the ACE wrap and the brace and I asked him to bend it for me and when he did, his knee cap slid off to the side!!!  Okay, now I want to throw up.  I can watch blood transfusions, bone marrow biopsies, clean up all matter of bodily fluids but I can not stand seeing that!  Ughhh...Oh man...well stay tuned.


Friday, December 7, 2012

I don't get it

I took Sam in to the doctor's today.  Our regular docs were out so we saw a different one.  I asked again if we could just schedule an MRI to see if there are any tears in Sam's knee that would need surgery.  If he is headed for surgery, I want it sooner than later.  Once again, I was told, it's too soon!!

What the heck do you mean it's too soon?!!  What are we waiting for?  The boy fell from a height of at least 4' and landed square on his knee, on a wood floor!  His knee took all the impact!  It is swollen to 3 times the size of his other leg and there is no recognizable knee cap!  I know kids who end up with knee surgery for way less impact than that.  If he escapes complications from this, it will be a major blessing!

We have had our fair share of broken things; ribs, more ribs, heads, ankle, foot, leg and back but I have never seen anything like this kind of tissue damage.  With the breaks, there was a little swelling but that's it.  I didn't know that you can get a fever just from trauma like this.  I also didn't know that when fluid is leaking from a joint because of an injury, there is a huge risk for a serious tissue infection called Cellulitis.  It can even be life threatening in a person with a compromised immune system.

So, I am hoping for the best this weekend.  Of course, he has to be at his dad's so that stinks and I'm not really a happy camper tonight.  I wrote out specific instructions for him to stay off his leg and keep it elevated and immobilized and iced.  I think I told him a hundred times so he won't forget.

On a bright note, despite Shelbie's difficult transfusion yesterday she has only reported a manageable headache and no hives!  That is huge!  She was able to attend the church Christmas party and even sing with the Bishop.  She did a beautiful job and I was really proud of her.  When she practiced earlier today, she almost passed out.  She was having the hardest time catching her breath I really didn't think she was going to make it tonight but she pulled through.  What a champ!

Oh, I better clarify something because I was pretty angry with our ER doc yesterday...our County hospital was just rated in the top 25 worst hospitals.  I think it was even in the top 5!  I wanted to share what Dr. John Allred says about that report, he did a lot of research to find out why since he works there and this is what he found.
This company is a 'for profit' research company that could be in a lot of hot water with hospitals all over the
 country. The American Hospital Association (AHA) out of Washington DC released a statement today that their research was full of Methodological Issues, Bias, use of unreliable measures, measures that were unfairly weighted, and significant errors in data. Essentially this company gave their best guess based on almost no accurate data. This study DOES NOT evaluate Nursing or Physician care in Obstetrics or Pediatrics. The most recent data released by the AHA ranks MMH and EIRMC as some of the top hospitals for their size and population base. The primary measures reported for MMH which resulted in such a low grade were 1. No hospitalist in 2009 and 2. No electronic order sets in 2009. Both of which MMH has in place in 2012."

Based on my experience with all the hospitals we visit I still think our local hospital is among the best despite our odd experience yesterday.  It is way better, hands down than the next closest hospital we have just 30 minutes away.  That hospital is poorly designed, filthy, high patient to staff ratio and in the past has had the highest rate of staph infections!  

The staff and doctors at our little hospital are so kind and attentive.  The nurses are top notch and really care.  They do their homework!  Even when we get a new nurse for Shelbie, they have spent the previous day reviewing her past hospital admissions, reading information about Shwachman Diamond Syndrome and Mitochondrial Disease, and suggesting ideas that will help her cope for the day ahead.  I really appreciate the people we get to work with at the hospital here.  Don't believe everything you read I guess!


Thursday, December 6, 2012


I feel like I am living on a movie set!  I keep waiting for the director say "Cut!" and "That's a wrap!" but I never hear those words; nope, the plot just keeps getting thicker!  Today was a little unbelievable, even for me!

Shelbie had her IVIG today, as you know and it started out really good.  We had a great nurse who was so friendly and personable.  We loved her and she got the IV started on the first try!  That is a record this year!  That was about the only good thing today.  

Not even 10 minutes into the transfusion, she had a reaction.  Another bad one and she had problems breathing.  They acted quickly and shut it off and we all stood there staring at her wondering if she was going to be able to pull out of it or if they would have to start a steroid drip. In the middle of watching her, I got a call from the school.  It was Sam.  You know when you get a call at 10 in the morning from the school, they aren't calling to tell you what a great kid you have!

"Mom, I need you to come and pick me up."  Sam says in a weak voice.
"Oh no, are you sick?"
"No." he says
"Are you in trouble?"
"Did you forget something? Actually, instead of playing 20 questions, how about you tell me what is wrong."
"Well, I can't walk."
"What?!!! Ok, I'll be there in a second."
The school is just a couple of blocks from the hospital.  As I pull up to the school, they are wheeling Sam out on an office chair!  I lift him into the car and can't figure out if he is in shock or what was going on with him.  He finally told me that has doing a back flip off the gym wall before classes started and he missed the landing.  He tried to get through school but then the pain was too much and the swelling was out of control.

I called Spencer to have him come and stay with Shelbie and I took Sam downstairs to the ER.  We were there 2 hours and I was so angry!!!  The Doctor came in and she was wearing 3 polar fleece coats and her white doctor coat.  She looked like death.  I said, "How are you?"  and she grumbled back, "I'm sick.  What are you here for?"

Now, this particular doctor has taken care of my kids before and we actually had a major fight a few years ago when I had Spencer in there for seizures which ended up being Encephalitis.  She kept telling me I was just an anxious mom and nothing was wrong with him. I finally had to tell her that I was leaving Spencer behind because I was not taking a dying child home to take care of and she could take him home to take care of him herself and I walked right out of the hospital!!  I know, it was pretty dramatic and I still can't believe I did that.  She chased me out in the parking lot and told me to come back in and be reasonable.  I told her I would only if she would admit him.  She did.  The next day, our regular physician did a spinal tap and Spencer was diagnosed with Encephalitis and life flighted to Boise!!  It took her a few months before she apologized for not listening to me.  So, we've had our sorted past and she remembers us well and knows about the kids disease.

I reminded her that Samuel is in bone marrow failure and has neutropenia and low white count but she didn't listen once again and kept coughing and sneezing all over the place!  I was fit to be tied!  She may be a nice person but she is not that smart.  I showed her the gigantic, protruding bone on Sam's foot and she said that was just normal even though the other foot is clearly not gigantic with protruding bones!  His knee had tripled in size and I asked if she would do a CT Scan and/or MRI so we could see the soft tissue if the bones were intact.  She said, "No, we don't do that here."

I know better than to fight with her but inside I wanted to claw her eyes out!! Seriously, an emergency room at a county hospital doesn't do MRI's?  She must still think I am as stupid as a stick.  When the male nurse came in who knows me from all our other ER visits, I said, "Hey, could you please ask the radiologist to read the films, I don't trust her judgment."  He laughed and said he would pull some strings for me.

Turns out, there are no broken bones but there is definitely damage to some degree in the ligaments and tendons since he can't straighten or bend his knee.  We have to go see an Orthopedic Surgeon to make sure he won't need surgery!

Poor Sam.  They immobilized his entire leg with a brace so he had to spend the day in a hospital gown because he skinny jeans wouldn't fit over his legs!  He laid in a wheelchair for 10 hours!!  We just got home an hour ago and now he is running a fever!!!  I am so mad at that doctor!

Shelbie is completely wiped out.  Sam is on one couch and Shelbie on the just may be a long weekend!


Wednesday, December 5, 2012

IVIG tomorrow

Tomorrow is another IVIG day.  We are about 3 weeks late in getting this dose and boy can I tell. We've tried to get it sooner but so many people needed their pictures taken for Christmas cards and gifts that there wasn't a good time to schedule it.  Our doctor was a little miffed but you have to pick your battles. This is going to sound weird but I am 'excited' to see what her counts are.  Okay excited is not the word but neither is 'anxious'.  Let's go with curious.  I am curious to see what her blood is doing.

Everyday, there is a new crop of petechiae somewhere on her body.  She is having the hardest time controlling her body temperature, her blood pressure and a host of other problems.  IVIG will bump her platelets up and calm the dysautonomia.

I am really looking forward to Friday though.  Shelbie is slated to sing at the church Christmas party.  I am praying she will be able to sing without the companion of meningitis.  She is singing with the Bishop again.  It will be the first time in 4 years she has sung anything!  I heard them practicing the other night and I was moved to tears.  Her voice is so melodic and angelic though at the same time, I was sad to see how this disease has robbed her of so many things she needs to sing like she use to, like oxygen.  It was really hard for her to keep up her breathing while singing.  

But, regardless of how Friday turns out, I am proud of her.  Proud that she keeps her commitments,  proud that she keeps on going no matter how hard things get for her.  

What's New?

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