Skip to main content

The weekly re-cap

It was a big week and we survived!  Barely but we survived.

Wednesday was Shelbie's testing which I already reported on.  Thursday was IVIG which went off without a hitch and Thursday night, after I was done working, we headed to Salt Lake for Sam's cardiac testing.

The drive down was tiring as it was kind of late and sitting at a hospital all day is the most fatiguing thing you can possibly do.  I don't know what it is about hospitals but they make me tired.   The kids slept off and on and in the darkness of the night sky, it was hard at times to stay in the moment.  Anxiety continued in waves and it was hard.   I wondered if I would ever know how it feels to live carefree and without my companion of anxiety and worry.  No matter how hard I try, it always comes back to this sooner or later.

At 10:00, we decided to stop for dinner.  The kids wanted me to try In n Out. I've never been there so we decided to be adventurous.  I couldn't believe the line up for hamburgers at 10:00 at night!   They were pretty good burgers.  I didn't eat much because I was not feeling well.  Kind of sick to my stomach actually but the kids enjoyed every bite.

It was late by the time we got to our hotel.  Sam's tests were actually not right at the U of U but at a campus south of the city so it took a little longer than usual to get to.   We checked in and the hotel was filthy!  Disgusting!  I was so bugged but I was so tired so I didn't complain.  The pillows were dirty, the sheets were dirty.  There was fast food garbage on the floor along with beer bottle caps.  The bathtub was stained and there was only one towel!  ONE TOWEL!   The kids brought their own pillows so that made me feel better.   I slept in my coat with the hood pulled up on my head and wrapped up in a blanket that I had taken to the hospital earlier that day.

The next hot water!  Grrrr.
Then...I set up Maps on my phone with the address to the hospital and we left 35 minutes before our check in time.  Turns out, the nurse...the one who didn't bother calling me back for two weeks, had given me the wrong address and we ended up in some industrial part of town by the railroad tracks!

After a little recalculating and finding the correct address, we made it to the hospital with just a couple of minutes to spare!  Turns out, it was about 1/2 mile from our hotel!  Sheesh!

After a crazy 12 hours, I couldn't believe we were here, finally getting the test that was suppose to happen over 6 weeks ago!  I was tense and nervous and that was aggravated by the fact that they wouldn't let me stay with Sam.  So, we said goodbye in the hall.

2 hours is the time he had to spend in the MRI machine!  It was not an open MRI either.  Shelbie and I sat at the end of the hall counting the minutes.  I did get a chance to talk to my friend in California whose son has been really sick so it was a good distraction from worrying about how Sam was doing.

He said he did okay but he sure looked tired when it wall all said and done.

We had a late lunch and then tried to squeeze in something fun to distract us even more!

We have always wanted to find my great, great, great, great grandfather's grave so we went to the cemetery in Salt Lake where many of the prophets and apostles are buried.  It took almost an hour to find his grave but we did it!

I was glad to see he was in a nice part of the cemetery and he had a gold plaque showing that he crossed the plains with the other pioneers.

We also visited the graves of  President David O Mckay, President Spencer W. Kimball and President Gordon B Hinkley.  We saw the grave of the man who built most of the handcarts, cradles and coffins for the pioneers.  There were many more that we saw and many that made us wonder what their life was like.

It doesn't seem like a fun activity but my kids really enjoyed it.  So did I.   There's a lot of history in a cemetery if you think about it.  It felt nice to connect with family too!

Shelbie ended up getting sick with something strange...GI related so she had a tough night back in the rat trap of our hotel.  Saturday, I debated just heading straight home but she insisted that if we could get some Gatorade, Pepto Bismol and other medications, she would be able to do the activities we had planned.

We were going to go to a wave pool in the area but since she was so weak, we decided to change plans and go to the aquarium.  I had to rent a wheelchair for Shelbie and though I hate doing helps so much!!  She was able to sort of enjoy the exhibits and Sam didn't mind pushing her around.
The jelly fish exhibit was amazing!   I would have to say, this is one of the best aquariums I have been too!

That was the extent of our trip.  Pretty uneventful for the most part.  I wish the kids had of been feeling better so we could have a little more fun.  We never just take a vacation.  The only 'vacations' we get are when we leave town for medical appointments.  Those are never really that fun but we do the best we can.  

Not much is planned this week.  Test results start rolling in on March 10th so we have some time to panic, wait, think of the worst possible scenario, create catastrophic thinking know...that kind of thing.  Nothing like a good wait to really make a person crazy!



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.


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.…