Spencer is slowly improving.  It was the hardest thing in the world to leave him at his apartment and come home last night.  The HARDEST THING!   I filled up their fridge and pantry with easy to prepare foods he could make with one arm.  Got his meds organized, took out their garbage and tried to find a million other things to do so I wouldn't have to say goodbye but I did say goodbye and cried all the way home. 

A lot of people have asked me if the second time was easier.  No.  It was not.  Different kid, different circumstances. I've learned even more about pacemakers this time around.  Spencer's was so unexpected really and he is already in more dire circumstances health wise than Sam.  I know his heart has been struggling but I never thought it would ever stop after the episode last year.  I really thought that was just a fluke thing.

This was harder because I had to hear him relive that moment in the early morning hours of Saturday in a remote area of Zion's National Park.  When our doctor came in to pre-op and asked Spencer to replay the events, he was actually grimacing and gritting his teeth as the details unfolded.  That was also the first time I had heard him tell of the events.  I hadn't asked up to that point.  It took everything I had not to throw up.

Yesterday, when the head of Boston Scientific came in to check his pacemaker and be sure the wires were still in place, he said Spencer's 'pause' was the most impressive he had heard.  I found out in the cardiac department, they don't like to use the words death, die, flatlined, stopped...they prefer the word pause.  It kind of bugged me for some reason.  Except at one point, after our Cardiologist had used the word 'pause' a few times, he finally said, "Can we just say flatlined?  That's what happened.  You flatlined."

Spencer's first night in the hospital, his heart had more issues.  The Boston Scientific guy downloaded that first night's information and he said, "Wow, you really needed this!  I guess it's to be expected after what you've been through."  I didn't even ask what he meant but it didn't sound good.

Today, Spencer had to show up for a job interview and part of that interview was doing a trial video for them and have it edited by tomorrow morning.  His friend drove him and Spencer used his shoulder harness to mount his camera to.  Spencer has a really bad tremor so he has to have special gear that keeps the camera steady even though his hands aren't.  Those cages and gears are heavy and bulky but work really well.  So, for a couple of hours, he had that resting on his good side and did the best he could to film one handed.  One of the interview questions was if he would be dedicated to the job...really?  A kid shows up the day after heart surgery, films one handed and they have to wonder about his dedication? No one can say my kid is a quitter.

He's in pretty rough shape tonight just because he overdid it so much.  Let's hope he gets this job!  He is having an allergic reaction to the betadine that they used during surgery that was left on his skin under the dressing and all around.  Hopefully he can get that under control and rest well tonight and through the weekend.

Here at home, it's been damage control.  Sam especially is having a rough time.  He is so angry at everything.  The kids are so tired of all the struggle and plans always changing.  I took him out for lunch to try to get him to talk and process things and then we went up to the hospital to visit my friend.  On our way, the University called him and wanted to know why he couldn't get decent grades because I guess he's on academic warning.  Do they really call all the kids who get bad grades and ask why?  I was trying so hard to let Sam just handle it.  He finally told him about his learning disabilities and health problems so now, I get to go to a meeting with some academic people to defend my son's intelligence...or something. We are suppose to prove he has issues.  *Insert eye rolling*   I'm just over this.  I wish he could find his 'thing' like the other two have and we bag school altogether.   I'm done with higher learning.  We've forgotten how to value anything else in this country but grades.  Grades seems so ridiculous to be thinking about at a time like this.

So, all of that pushed Sam over the proverbial edge and now I have one angry, heartbroken kid on my hands. An angry Sam means a reckless Sam.  I imagine he's taking out his frustrations at the gym and I don't even want to know what he's been doing to push the limits of his body.

Tonight, I took Shelbie in to the city so she could do some shopping.  It was good for her to get out and she's doing better than Sam or Spencer, at least emotionally.

It's going to take awhile before we really get back to normal but we'll get there I'm sure.

On the drive home last night, I realized that the kids are past due for their bone marrow biopsies.  In light of things, I'm going to check with our Oncologist and see if we can wait on that til Spring.  Spencer's next surgery will be here in just 6 weeks and Shelbie's PET scan to follow her brain tumor is coming up.  I think the kids have done enough for one year.  I'd hate for 2018 to bore us to death.

I'm feeling the urge to silver line this week.  My awesome neighbors were in Salt Lake on Tuesday and came up to visit Spencer in the hospital.   Some other friends who live in the area also came up to the hospital. Our dear friends from Colorado had her daughter bring over a ton of food tonight from Panda Express.  It was so lovely not cooking and not worrying about what to make.  I have had many people reach out to offer prayers and anything else we may need and that is so kind.  I know it's not easy to approach us all the time, especially when it's hard to find the right words to say.  Each text message or otherwise has been so nice. Thank you so much!   



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