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Showing posts from April, 2013

One big day

What a big day today!

We spent the day at the hospital for 'Family Day'.  We spent the entire day listening to some of the top doctors in the Shwachman Diamond Syndrome Arena.

Our Hematologist, Dr. Shimamura was our host for the day.  She gave a great talk on SDS and some of the new research.  We then heard from a geneticist, a transplant specialist who I loved!  She has actually been working behind the scene for us.  Whenever the kids start a new treatment, the doctors visit with the transplant team to make sure we aren't doing anything that will cause any problems with transplant should we have to go down that road in the future.

There was also a GI specialist and a new Adult SDS Hematologist.  I was really excited to hear that Dr. Shimamura has teamed up with an Adult Hematologist to help transition her pediatric patients.  I was so relieved when I was able to visit with her and see that she has a wonderful bedside manner about her and that she is just as accessible a…

Faith in Humanity

We have broken our trip to Seattle into two days.  Thursday, we got into my parent's house late and Friday, spent the morning with them.  My niece and her husband were there as well so it was a fun morning.  We headed into Spokane for lunch then Shelbie took their picture in downtown Spokane.

While they did their thing, my parents and Spencer and Sam and I just wandered around thoroughly enjoying the warm sun!  Oh how I've missed the sun!!  There was this awesome two story brick building that was home to some trendy, fun stores.  I sat on the balcony of the second floor just watching the world go by.

A lady came out of her store and made small talk with me.  The air outside her spa smelled so good so I told how fabulous the scent was.  She said, "Come in, let me show you these amazing new candles."  She explained how her friend was able to make this amazing candles that were just like an expensive New York brand.  She asked if we lived in Spokane and I told her we…

Racking up the bill

Bills are so much fun!!  I had to go pick up the Fidaxomicin for Samuel this afternoon and it came to $3500!! For a 10 DAY supply!  A 10 DAY supply!! Sheesh!  Add that to the rest of the medications they take and this month alone, we have racked up a whopping $9500.00 pharmacy bill!

I'm afraid to look at our yearly prescription maximums because I fear we are getting really close to exceeding the amount they will allow us to spend.  After that, it's going to be coming out of my pocket and that is a scary thought!

 Let's not even mention the fact that on Friday alone, our hospital bill was nearly $15,000.   Then, let's not mention the fact that all the testing for Sam was over $1000.00

Just think of all the things you can buy for $9500.00!

-I could finish my basement
-buy all new furniture
-buy a new car
-go on a much needed vacation to somewhere warm
-I could sponsor two kids with Make A Wish
-I could buy a whole new wardrobe for everyone!
-I could make a dent in my deb…

As our world turns

No antibiotics today for Sam.  We decided that using IV antibiotics would be relatively ineffective since it doesn't cross the gut mucosa, so....we are going to start a new medication on Monday.  It's only been on the market for about 2 years if that, it's called Fidaxomicin.  In the past we've tried Flagyl and Vancomycin and wasn't entirely impressed with the results so I'm hoping this one works better.  It better because it's going to cost me a small fortune.  The story of my life.

After a couple of weeks on that, he will be switched to another one in hopes of preventing a recurring infection.

Sam is so sad!  Holy Cow, he is one stubborn boy when it comes to being sick.  He is so mad that he can't be with his friends.  Our doctor said if he is just around healthy individuals, it's probably fine and no one should catch it.  But, he's the only one who feels that way.  At the hospital, they make people gown up and mask up and wear gloves when th…

You don't know what you're missing!

If you aren't lucky enough to have at least one kid with Shwachman Diamond Syndrome, you have no idea what you are missing!! Seriously...okay, not serious.

Sam woke up this morning to a mess of blood in his stool.  So much for my mother's instinct and choosing Cellulitis over C- Diff. to treat.  We actually didn't have a positive stool study when I was guessing he had C-diff but we do now.  Believe me, we have C-Diff.

We also have a little bit of a plan starting to percolate.  We may start IV Vancomycin tomorrow in the hospital.  There are only two antibiotics that treat C-Diff, Flagyl and Vanco.  Vanco is super hard to obtain in pill form and extremely expensive.  We stopped the antibiotic for his Cellulitis and if that causes things to get worse, then Sam will have a procedure to remove his toe nail so they can get down to the abscess and drain it. Yuck.  Sounds awful! It is awful.

What makes this so hard is that Sam's white count is low, low, low and he is neutrop…

A worm in horse radish...

I heard this Yiddish saying the other day and immediately fell in love with it!  "To a worm in horseradish, the world is horseradish."

It's really hard to live in the world of chronic illness but at the same time, it's easy too.  I kind of know what to expect from day to day.  I know that while each day will be different, that's what stays the same; the unpredictability of it all!  Did I just talk you in circles?

I never know what to expect but then I know to expect that I will never know what to expect.  Some days, are very good and I think to myself, "Wow, there is life beyond the exam room doors, the poking, the prodding, the unexplained fevers, the bacterial infections that never end, the colitis, the celulitis, the dysautonomia, the IVIG, bone marrow failures, the this, the that."

Some days, are very bad and we spend the day drowning in horseradish and it is bitter and stings our throats and burns our cheeks and it seems that we will always be in …

Something about Sunday

But then...Sunday arrives!

There is something awesome about Sundays!  God was really smart to declare Sunday a day of rest.  While there are some Sundays I have to work, it remains the day that I am able to realign my focus.

The end of the week feels like the end of a marathon race and the sprint in my step has given way to bulging blisters from the uncomfortable rubs of life but then Sunday arrives!  Somehow, engaging in spiritual things is as much a soothing balm for my physical body as it is for my soul.

Sometimes, more often than I care to really admit, I wonder how I am going to continue with this frenetic pace of life; like a clown sentenced to a life of spinning plates on flimsy sticks but then, Sunday arrives!

Friday, I was left with the unpopular job of figuring out the best treatment for Sam.  I don't love making these life changing decisions but then, Sunday arrives...I think I have made the best decision for him and the clarity I feel on this day, is just that, clear.…


We have dealt with Cellulitis about 100 times, not really but if' you've dealt with it once, it's one time too many and feels like 100 times.  We have also dealt with C-Diff more times than we care to admit.

Both infections are hard to treat and both can become serious if you aren't vigilant. So, it's been a couple of months at least since Sam started in with Cellulitis and now C-diff with a side order of Colitis. Awesome!

All of a sudden, I feel completely lost.  I know how to treat each one separately but I have no idea how we treat them both together.  The doctor was a little miffed too.  He told me to stop the Keflex antibiotics for Cellulitis and start the Flagyl for the C-diff and Pentasa for the Colitis.  We gathered our prescriptions and left.  As I drove home, I had a really sick feeling about stopping the Keflex.  As it is, the infection is so bad, we may have to see a Podiatrist next week and Sam might lose his toenail.  That will be an awful predicame…

Calming down...oh wait, just kidding

It's been a tricky sort of week and a weird one at that!

I am doing better today.  The swelling is going down, I could actually wear pants today.  There are just a few patches of hives left and tonight, the overall swelling in my joints seems to be subsiding.  Best of all, I haven't cried all day!  Yay...I hope that means the awful and nasty Prednisone is working it's way out and my kidney's have remembered that they have a job to do.  That would be extra nice.

So, as far as I go, things are calming down.  I may sound selfish here but I really can't be sick.  It's true what they say, the mother sets the tone for the entire family.  When I am down physically or emotionally, it drains the entire family of life preserving hope and energy and it's a hard thing to get back.  Our groove gets interrupted and my efforts to have life run like clockwork gets all reset into something that looks a little more like chaos.   The kids start worrying that I am dying and if…

Turning the Tables

You haven't lived the life of a single mom until you have to have your kids drive YOU to the emergency room!  You haven't lived until your emergency contact person for yourself is your kid.  I am not a happy camper today, in fact, I'm down right discouraged.  Bleh!

I decided I needed to do another Enbrel injection on Friday and try to make this work.  Three weeks ago wasn't fun and my leg is now permanently discolored purple from the swelling and tissue destruction that happened.   I did the injection in my other leg and within an hour, I had a 3" welt.  I took Benedryl, Ibuprofen and a muscle relaxer to try to keep the swelling to a minimum.  It wouldn't stop.

I called the Enbrel Helpline when it was 6" in diameter and while the nurse was super friendly and had a great phone side manner, she was not at all helpful.  She just kept telling me how interesting it was that my leg was swelling up.  Still not sure what the point to a 24 hour on call nurse with…

The Difference a Day Makes the evening, I was spent and just getting started on 6 hours of drafting I needed to have done by last night.

Things with the Neurologist are working out.  Not the one we love in Seattle but after venting with a few friends in my support group, one of them reminded me of THIS foundation that could offer me some help.  I called them and spoke to a wonderful and helpful woman.  I told her I needed to find a  Mitochondrial Specialist within a 15 hour radius of my house.  It didn't even take 5 minutes and I had a list of 6 doctors to choose from.  I have settled on the only two that are in Utah, the rest were in Colorado.  One is in Salt Lake and is relatively young and trained under one of the top Mito docs in the United States, Dr. Falk.  There are 3 names you hear all the time, the ones who research and publish papers and Dr. Falk and Dr. Saneto are two of them, so that is promising and the fact that she is young and hopefully excited to learn and on…


I have been working so hard to get appointments scheduled for Seattle, it's like another part time job trying to get everything to work out.  It seems like everything these days is like pulling teeth that are rooted in concrete!  I tell ya....

I started this over 2 months ago and finally heard yesterday that our Neurologist will not have time to see us. All along, the nurse who has been doing the scheduling for me completely dropped the ball. I call and call and only get her voice mail.  I leave message after message and still don't get a return call.  I finally just called to the Neurologist's scheduling nurse to find out if we were set up and she said, "Well, the other nurse called a couple of months ago but she didn't confirm the dates so now the doctor is booked.  Can you come back in June?"

Trying my best to be patient with her, I said, "I can't just come back in June.  Gas is nigh on $4 a gallon and by the time I pay for a hotel for a few days,…