Surgery Eve

We made it to Salt Lake...a trip that was a little longer than usual.  A couple of hours from home, Spencer called and Shelbie was having an IgG reaction...I think.  She had lost her peripheral vision in her right eye and got upset.  She told Spencer to get her some medication but she told him the wrong meds and the wrong dose!  He was just doing what he was told but she ended up taking triple the dose she was suppose to take.

I had to pull over and do a little research about what do with a slight drug overdose.  By the time I finished that and communicating with them, Sam was feeling sick so I had to round up some nausea meds for him.  Probably nerves and not eating.  It's never easy.

So far, I think they have avoided an ER trip.  I'm so glad Spencer is there but I really should have insisted that they come so I can keep an eye on things.  It also taught me that I need to come up with a chart of problems/symptoms and what med to take and how much.  I just can't trust that she has the memory power to figure it out on her own.  Life is getting so complicated and overwhelming...

A praying mantis outside of our hotel room tonight.  Even the bugs are praying for Sam. 


Sam has been pretty good on the way down but tonight, not so good.  I have tried to talk to him about what he is feeling but he just shrugs his shoulders and I get nothing.  I had no choice but to shake some thoughts out of his distant mind and tightly pursed lips, so we had a game of 'Would you rather'.

Would you rather be awake or asleep for surgery?
Would you rather have bowel reconstruction, bone marrow biopsy or pace maker surgery?
       (After tomorrow, he will have had all three surgeries)

You get the picture...It really helped and he did a lot of talking.  He also wondered what the lowest heart rate on record is so we had some fun doing a little record researching.

Did you know the lowest recorded heart rate in a 'healthy' person was 26 bpm in an 81 year old, in 2014?  It's debatable to me how healthy the heart of an 81 year old can really be.  The next lowest heart rate is a 5 time winner of the Tour de France with a heart rate of 28!  Looks like Sam is tied for the world record!

The thing he is worried the most about is being awake for such a long surgery.
 He asked, "If I forget tomorrow, please remind the doctor that Versed and Fentanyl don't work for me and they usually have to give me way more than normal people?  I just really want to not be awake for this.  I don't want to feel them inside my heart."  Ugh...the things you never want to hear from your child.

I am feeling very anxious tonight.  I just realized how serious this is.  I just realized that this isn't just a band-aid; as if we get to take it out when his heart is healed.  His heart is sick and will not be healed.  For the rest of his life, he will have a computer operating his beating heart.  For the next 8 weeks, he won't be able to use his left arm.  For the next several months, I will have to monitor his pace maker several times a day to be sure it is keeping beat.  This is not a 'place a pace maker and forget about it' kind of deal.  I guess I hadn't thought that far ahead.  I'm a little overwhelmed to say the least.   The panic comes in waves and it takes a lot of energy to keep my thoughts focused on the Savior and my inheritance of hope and faith.

Sam is also worried about what it's going to be like to feel his heart beating 65 times a minute.  He's really nervous about that.  Scared in fact.  Think about it...for months he has become accustomed to abnormal and it's his normal.  He doesn't even remember when his heart beat normally. Tomorrow it will be more than double what he lives with.  I'm sure that will feel so strange.  Funny how being normal can be such a scary thing.  We live in such a strange sort of reality.

Thank you to so many who are praying for Sam, Shelbie and Spencer.  This is pretty hard but I guess it's what we do and I keep telling myself, time will continue to tick by, and no feeling we suffer through in each minute will last forever.
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