Tuesday, September 22, 2015

Don't Panic

For the past three hours, my mantra has become...Don't Panic!

Spencer called me tonight around 10 pm after I got home from a long, long day working, to tell me that he has lost more weight.

1.5 weeks ago, he left home weighing a whopping 114lbs.
Saturday, he weighed 110 lbs.
Monday, he weighed barely 109 lbs...right after he ate a 2lb burrito...so he probably weighed more like 107.  Ugh.

He is becoming alarmed.  I was alarmed back at 119 lbs. Now, I'm just trying not to panic.

At this point, I think it would be stupid for him not to get a feeding tube.  There comes a point when it becomes impossible to eat enough calories to stabilize let alone gain 30 pounds back.  We are just about at that point.

He will need to eat at least 2500 calories a day to maintain his weight.  2500 calories of real food, not a 2 lb burrito from a fast food joint that probably doesn't even contain meat, just a bunch of fillers.  Doing a continuous feeding through the night will boost his calories so that he doesn't have to eat so much bulk that fills his stomach and creates pain.

Of course, he isn't adopting this plan very readily.  No one wants a feeding tube.  Especially a 21 year old boy just trying to live out his dreams.  If this happens, it would be a peg tube in his stomach so no one would even know it existed.

I don't know what to do...  Call the GI doc in about 6 hours and hope he has some answers.

As I talked to him, I felt like we needed to make a plan.  Sometimes, plans just give you peace of mind that you are doing something.  So, the plan Spencer came up with was to drink protein shakes all day long...as much as he can tolerate.  I am going to order a case of Ensure Clear- a juice that packs a wallop of calories in a small amount.  I will also come up with some things he can easily fix that have a million calories without a lot of bulk...like adding butter and coconut oil to everything!

It's going to be a stressful week.  He is planning to come home next Monday night because he has doctor appointments back to back on Tuesday.  I almost just want to cancel them.  We meet with the pulmonologist to get his PFT results.  I don't think I will be able to handle hearing that he too has pulmonary AVM's although it's dumb of me to assume he will be normal either.  It's starting to feel like too much.

On a side note...I think I feel too much.  I think I am way too much in tune to the interactions I have in a day.  I think every interaction I have is calculated for my learning and my growth.  This morning, I ran into the grocery to grab a treat I was taking to an acquaintance who I knew was having some trials and such.  A lady was standing in front of the stuff I needed so I asked her if I could grab something.  When she turned around, it was an old friend from years ago!  She use to come in and help Sam with some developmental stuff when he was a baby.  Her husband passed away two months ago from a lingering illness.

We talked candidly about her new situation, about being a caregiver, about dying, about death...she told me that the cause of death was Anorexia.  He weighed 109 lbs.  In reality, he died from a disease that was far from anorexia but as it goes with disease, a person often ends up being too sick to eat and weight loss happens with almost every fatal disease.  I think it's unfair to list anorexia as the cause of death...it was kidney cancer that killed him!

Maybe it was a total coincidence but the truth is...I can't stop thinking about that.  Sometimes, I am easily spooked.  I wish it wasn't so.

I will get maybe a couple of hours to sleep tonight and in the mean time...don't panic!


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