Saturday, September 17, 2016

The week in review...

I was thinking...

Who decided that a mother sets the tone for the family?  How is this even fair?

I guess this was the whiny me thinking this.  Maybe it would be different if I had a significant other to share this load with, some tag team player so that when I needed to tap out, someone else could step in.

The past week was painfully difficult, it was just one setback after another.  Spencer and I left for Salt Lake on Thursday night and drove straight to our hotel and crashed. We had spent the morning doing testing at the local hospital and that in itself took nearly three hours.

Friday morning, we arrived early for his bone marrow biopsy.  The nurse told me the day before that if we were 15 minutes early we were late.  So, we got there a full hour before his appointed time and waited an hour and a half!  We had a nice visit with an elderly man in the waiting room.

When we got in the room where the biopsy was to take place, it quickly became evident that he would actually be wide awake and alert for the biopsy! I was so bugged!  I really was not happy.  I made such a huge effort to make sure he would be sedated.  All they gave him was some Fentanyl and Versed which does absolutely nothing for my kids. He was very much awake and aware and still remembers everything.

I had a very hard time watching the procedure.  I have sat through more than a few dozen but my kids were always fully sedated so knowing they weren't suffering, made it easy on me.  This was not good for my fragile mamma heart.  Spencer was a champ!  He even had to have it done twice because strangely enough, the first puncture, no marrow came out.  With the second puncture, only bubbles came out at first.  It was very strange.
The nurse practitioner draws out the marrow from the back of the hip bone.

The steel hollow needle sticking out of Spencer's bone is about 1/8th of an inch in diameter and gets screwed into the bone and  from that, the marrow is sucked out and a portion of the bone is taken out.  His piece was about 3/4" long by 1/8".  It was a pretty good chunk.   He's awake for this!!! Insanity!  All because insurance companies and hospitals care more about their pocket book than patients...at least that is how it feels. 

This was the needle going in deeper to get the biopsy portion of the bone fragment.  It takes a lot of muscles to do this procedure.

Slides and tubes of marrow.  In total, she drew out 6 syringes of marrow.

It takes the lab tech nearly a full hour to prepare the slides.

Spencer trying to sleep off the drugs and pain afterwards. 

  Once his vitals were stable, they let him go.  Aside from the lack of sedation for the test, this was much better than when we did them in Seattle.  The staff there was grouchy every time!  This team was fun and lighthearted which eased some of the tension in the room.

We took Spencer downtown to get some food since he had been fasting but had to return for his pacemaker consult.

That was a confusing and frustrating visit.  Basically, they still don't have enough data to feel convinced that a pacemaker is the way to go for him.  The doctor wants more information and so next week, Spencer will have a small procedure to place what is called a Loop Recorder in his chest.  It is basically a permanent EKG monitor.  The battery lasts three years, so in theory, that's how long he will have it in place.
This is the Loop Recorder.


They are also going to start him on a medication to increase the pressure in his arteries.  The doctor isn't sure if we have an electrical issue or a neurological problem or a cell exhaustion problem like Mitochondrial/Telomere issue.  

One thing they do know, is that as Spencer moves around, his heart can't maintain a regular pressure.  In normal people, when the blood pressure drops, the heart rate speeds up to counteract the effects.  In Spencer, they have found that when his blood pressure drops, his heart rate drops quite low.  When it happens, the blood can't get back to his heart or his brain from his lower extremities and so the brain shuts things down in order to save the organs...that is when he loses his vision, blacks out, passes out...etc.

It is the doctor's hope that by increasing the 'bloat' and pressure in the arteries, the heart rate will keep up better.  We'll see.  It is just an experiment because they really have no clue!  As usual.

When we were finally done, 9 hours later, we went upstairs at Huntsman to visit my cousin and her husband.  He had been having a pretty rough week and two weeks since he received his bone marrow transplant, so while he napped, we sat outside the lounge area and visited.  From where we sat, you could still see down the hall to her husband's room.  Not long into our visit,  we heard the most stunning commotion.  A woman was screaming, nurse's yelling and the code red alarms blaring.  It sounded like a table overturned and nurses and other hospital staff were running frantically through the halls.  It wasn't long before there were more than 20 people working on a man to bring him back to life.

I immediately went to panic mode.  I really just wanted to run as fast and far as I could.  It made my heart ache for the man and his wife who soon emerged to a chair near us where she was calmed and supported.

It was a traumatic day in so many ways.  On our long drive home last night, I got a hysterical call from Shelbie.  She had been hit on the highway and it did some significant damage to her car.

Today has just been another long and difficult one.  On Monday, Samuel has a horrible procedure to get through here and then we have another long day towards the end of the week, back in Utah for Spencer's heart procedure and both boys will see if there is any hope or help to improve their lung function as we visit with the Pulmonologist.



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