Skip to main content

For Today...

I've been up and at it since 4 am.  It's 9:30 am and what I wouldn't give for a nap but there is no time for napping.  Today is another big doctor day for Mr. Sam.

There is a part of the ER trip I left out.  The ER doc didn't tell me that there was blood in Sam's urine or that Sam's liver enzymes and glucose were extremely high.  Not just on the high end of normal but triple over normal.   Since the pulmonology visit wherein the doctor told me Sam's heart was 100% normal, even though I was looking at the abnormal paperwork, my trust in doctors has plummeted.  I use to take what they said at face value.  Not anymore, so I requested the lab work from the hospital before we left.

I was pretty alarmed to see those numbers as well as his abnormally high white cells.  I did a little research and the liver enzyme can actually be a pre-cursor to an upcoming cardiac crisis or liver crisis.  I felt really uneasy about just watching him so I called our cardiologist and hematologist in Seattle just to make sure I was doing the right thing.

I went to the school to see about pulling Sam out for the remainder of the trimester at least.  It's interesting to be faced with this.  Again, I'm really torn.  Sam has missed 5 weeks of school this trimester alone due to fevers, and pneumonia.  His immune system just can't keep on top of it all.  I feel like keeping him home til we sort out the heart problems will be better for his physical health.  Emotionally...that's another thing.  I know he needs his friends to keep him sane.  It's a real catch 22.

As I was talking to the school counselor, it hit me just how serious this situation is.  This is where the rubber meets the road.  That moment when you see the face of this disease for what it really is and all of a sudden, what happens to other people, is happening to you!  I didn't like that overwhelming feeling.  Today, everything seems too big and I feel too small.

At any rate, we are off to see a few different doctors today.  One appointment we will recheck the liver numbers and culture the urine since the hospital neglected to do that part...duh...Since when do doctors stop doing the basic protocols like culturing urine when blood is present...and we aren't talking a trace of blood but quite a bit of blood.

This morning I woke up with a terrific headache and sore throat.  So, for breakfast, I had two tablespoons of apple cider vinegar, 2000 mg of Vitamin C, 2 Cold Eze and then a tall glass of baking soda water...Yum, yum!!  Now I feel like I'm going to puke.  All in an effort to halt this virus from taking over my body!  I don't have any time for sickness right now.



Popular posts from this blog

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…

Obscure Sorrows

I sat on the bench like I usually do on Saturday mornings, the organ music was slow and quiet.  I think that's why I like playing there; its just slow and quiet.  I set the pace.  I mostly keep my eye on the music for fear of messing up but I did notice a couple walk in.  I had known them a few years ago, not well, but enough.  Enough to notice each other and say Hi.  I had heard recently that she had breast cancer.  She's likely a good 10 years younger than me.  Her red wig was striking, her eyebrows carefully in place and by all accounts, she made cancer look good.  
I had the strangest feeling I've never had before.  She has no idea, that somehow, I know all about her recent strife with cancer.  I have heard how it struck, how she deals; I know more than a distant acquaintance like me should know.   She is living this complicated, unfair, story that went off in a way she scarcely expected.  For a moment, I felt like I was an extra in her 3rd act; the struggle.  And, I wo…

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…