Thursday, November 20, 2014

12 Weeks of Holiday Giving

I was thinking today, as we drove to yet another hospital for more testing...This has been a long 12 weeks of hospitals and doctors.  Then, as I thought about all the bills we are racking up, they must be glad we are around; we are their job security!  Ha ha...not literally, but it sure feels like we are 'giving' a lot to our local docs, hospitals, and the car repair shop!  I would estimate our medical expenses over the past  12 weeks are somewhere to the tune of $75,000.  No joke!

So, I call it our '12 weeks of holiday giving'.  Hopefully, we are giving something as we trip through these visits besides money.

Last week, for Sam's procedure, the doc said, "We haven't seen you guys in awhile!"
"That's right, I decided to give you a break from us!" I said.
"Thank you! You guys are really hard." he replied.

I wasn't expecting that answer, but since we like to joke about everything...

I said, "Did you just thank me for giving you a break?"
"Yes, but I didn't mean it like that.  I mean you guys are really hard because nothing is normal and we don't know what to do but we have missed you.  You are always so pleasant and happy and we have missed that!"  

I hope he meant that.  We try to be pleasant even when things aren't looking so great and even when they don't know what to do.  So, I hope as we frequent emergency rooms, MRI rooms, hospital rooms, they don't completely roll their eyes and run the other way!

Today was Sam's big day at the hospital.  He had some specialized testing done on his lungs since Pulmonary Fibrosis is a big problem for DC kids.  It involved a series of different kinds of tests.
They let me sit in the control room for his CT Scan.  I was shocked when his skeleton showed up on the screen!  Take a look!

Look at that crooked spine!  Oh my gosh!  I knew he had scoliosis but this is not good.  No one ever mentioned that it was this bad!  You can even see how it is affecting his hip on the right side and the ribs.   I said to the radiology tech, "Does that spine look normal to you?"

"Wow! That's quite a curve."

Yes, it is.  Nothing like having your initial monogrammed on your spine!  I'm hoping it is the angle or something but I will definitely be following up with this one.  I know Spencer also has scoliosis and I've seen his curve since he has broken his back twice, but it's nothing compared to this!  So, that was a surprise.

 More testing.  This lady was so nice!!  She asked Sam why he was having such extreme lung testing done.  He shrugged his shoulders and laughed.  I explained the whole DC diagnosis and when I said, 'Pulmonary Fibrosis', she winced!  Ya, it's a scary thing!  If we can keep their lungs healthy then that's half the battle.  No one survives pulmonary fibrosis for too many years.   She asked how rare the disease was and I told her there are only three people with our mutation known in the world and less than 75 in North America with the actual, non mutated disease.  She stood up and asked if she could shake Sam's hand!  It was tender!

She said it was a joy and privilege to be working with him!

We came home to a sick Shelbie!  The IVIG headache had set in early this morning and now it was raging!  I had just enough time to make dinner, which we ate in the dark because she couldn't stand any light.  I ran to work really fast while Sam stayed with her and then I ran home and took her to the ER.

There we sat the rest of the night.  They put us in the pediatric was really such a cute little room and the seating was a park bench!

So, it's been a very long day but we had great nurses and radiologists to work with today.  Everyone was so kind and helpful.  We tried to be pleasant on our holiday giving tour, and funny.  You gotta laugh cause once the tears start...they don't stop very soon!

I will end with something that moved me today in the waiting room at the hospital for Sam's testing.  A woman came in, clearly not well.  She looked to be about my age but she had had an 'event' in her life, maybe a stroke or something.  She dragged her foot behind her, her speech was slurred and her hands jerked around.

She checked in and they told her to have a seat.  She sat down a couple of chairs away from me.  I could tell she was feeling uneasy.  After a minute, she got back up and asked the nurse if she could call someone to go into the testing with her.  She said, "I'm just so scared!  I can't do this alone."

I almost started crying.  I wanted to just put my arm around her and tell her I would go with her.  She went down the hall and made a phone call.  I sure hope they got their in time to be with her.  We were whisked off to our room.

I felt so blessed that I can always be with my kids when they need me.

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