Skip to main content

More of the same

We are still pretty much on the same rocky road.  Shelbie was lucky enough to develop a secondary bacterial infection.  Shocking!   And, not lucky at all.

When I called on Monday to schedule an appointment with our family doc here, they told me he was booked out until March!  Are you kidding me?  His partner is also booked out that far.  I'm not a huge fan of their PA's, mostly because they are all new and I just don't have it in me to explain the whole, long, dreadful story when all I need is an antibiotic prescription.

This isn't the first time I've called and they have been booked and I did try the PA's once but I made the hard decision to change clinics.  It was really hard and obviously meant that I did have to explain the whole nine yards. We settled on the urgent care clinic we've been frequenting lately.

It'll be alright though, I think the doc was a little overwhelmed.  Or a lot overwhelmed.  Anyways, she now has a sinus infection and her lungs sound pretty rough so he was very concerned that we are headed onto the pneumonia train!  I was grateful that he was aggressive in treating her.  The antibiotic she needs has a strong interaction with three of her other meds so she has to cut way back on those or she will end up with some heart issues which we really don't need.  Cutting back on those medications is going to create some more problems but such is life...it's only for 5 days.

Shelbie is pretty much a wreck of a person right now.  She's been sick for so long and it's wearing her down. I don't blame her at all but it's hard! It's been hard on all of us.

Sam is not better but he isn't worse either.  We see our Oncologist in 2.5 weeks for our quarterly check up so we will have the hard conversation then about what to with him.  Pneumonia for the 3rd time in 6 months isn't a good sign.

We did get a few tests back that were surprising to me. Shelbie's MRI of her spine came back normal.  Very normal, no signs of granulomas or tethered nerves which is huge and a great blessing!!!

Some labs came back and every single cell line in her blood is well below normal...very, very low! Pancytopenia! Her white count was barely at 2 and she is neutropenic at 800, (if memory serves me right).  It's been a terribly long time since she was that low.  There is one number, the Mean Platelet Volume, that always stood out to me when she has having severe and serious platelet issues- that number was always high.  We had one Immunologist tell me that when that number is above normal, it usually indicates that platelet destruction has begun. Today, that number is as high as it was when she was at her sickest with ITP, 14.  So, I'm very nervous and will be watching that closely.

I feel like we are caught in a downward spiral.  It is very reminiscent of 2007 and 2010 when she crashed.

I'm still struggling to recoup from last week.  It's just a combination of fatigue and worry I guess.  I never seem to get much of a break between the blows.  It is becoming more and more difficult to make a living, take care of kids and take care of myself.

The front of my house is being torn off tomorrow!!  That is actually a good thing!  It means for the first time in 11 years, my basement will stop getting water in it!   I think we might celebrate big this weekend...






Photobucket

Comments

Popular posts from this blog

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…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

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.…