Wednesday, February 11, 2015

The Rubber Meets the Road


I struggle to find a title to this post.

Truly, the reality of life struck again.

Shelbie's pulmonology appointment was not a favorable one.  I'm not sure why I tell myself to 'brace for the worst' because when it happens, I'm not at all 'braced' to hear it!   It's such a pointless adage!

So...how shall I say this...

Shelbie's lung diffusion numbers, or the pressure in her lungs is nearly as high as Sam's.  So, we got the usual pep talk..."It's probably just a hole in her heart, nothing a little open heart surgery can't fix."
Off we go for a bubble echo study!

UGH!!! I thought Ground Hog day was last week?!!

Wait...that isn't all!!

Shelbie's lungs are spotted with a fungus.  Fungus + Impaired Immune System= Extreme seriousness!
Or...in other words, this sucks!!!!!!!!  Get it?

Wait...that isn't all!!

Some of the diseased spots are calcified.  Hardened.  Correct me if I'm wrong but your lungs are suppose to be soft, supple, lubricated...not hard like bones!

I don't even know what this means.  He asked if she was born in Phoenix!  Apparently this is a fungus common in Phoenix.  The answer to that is NO, she was not born in Phoenix.  Then he said, "Well, it can also be caused from Measles."  Well, Shelbie has been immunized against measles and has never had the disease or been exposed to it!

Just speculating...I believe it's time to go to Seattle.  I imagine we will meet with a new Hematologist for Adults, Immunology, Infectious Disease (not to scare anyone, she is not contagious!!!) ((Infectious Disease because this just sealed the deal that she will probably not be eligible for a bone marrow transplant)) let's see...where was I....Cardiology...and Pulmonology!

Oh...and just for kicks and giggles, this doctor who I am still not sure how I feel about him...said, "And, your son DOES have a hole in his heart.  We need to do a transesophogeal echocardiogram.  Looks like you produced a batch of kids with holes in their hearts."   I'm assuming he meant that to be funny!  Not so much but I commend him on his efforts.

So...I guess it goes without saying that tonight has not been fun.  We've been playing Humpty Dumpty.  This is a fun little game where I call in all the King's Horses and all of his men too and we try to put my kids back together again.  Sad...

On a more positive note because really, let's silver line this just a bit for the sake of posterity or something...I realized tonight, when I was visiting with some leaders from church who stopped by, not knowing what they were walking into that we really are doing okay.  It all sounds bad, and it is.  It all sounds sad , and it is but at the end of the day, if I have left my kids with a prayer in their heart, a scripture in their head, loves, kisses and we did one nice thing for someone, then really...what a great day!

It's going to be okay.  I know that God has a plan and we will be led to the next best thing for us.  I know that to be true.  We are still human, it still hurts but this is not a trial of my Faith.  God is good.  He knows how to give good gifts.  He will lead us along.

On a lighter note still!!! You're going to love this if you're still reading... In our usual family fashion of having fun and making the most of things...Here is a picture from the doctor's office while we waited over an hour to be seen...

The kids were acting out scenes from movies.  This step stool was the perfect prop!!!  Name this movie.....

Titanic!!!  It was hilarious because all Shelbie had to do was point to the stool and say, "Sam, Titanic!" and Sam ran up there and knew exactly what to do and what she was thinking!!  So funny! I was trying to snap this picture as I heard the doctor approach the exam room door! The kids scatter back to their seats but I think he caught Sam doing a little pirouette off the stool!  Funny.  I'm glad we still find a way to laugh.  I love this picture! I love my kids.  I miss Spencer but I'm so glad he is being spared all this.  He is blessed.
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