Thursday, March 21, 2013


Eli is throwing us thru a constant revolving loop right now.

He met with his GI doc on Monday.  We are back to multiple changes.  He's taken Eli off his rotating antibiotics for the small bowel overgrowth.  At this point they aren't controlling it and we are constantly running the risk of building up antibiotic resistances from using them so frequently.  His intestines are also confusing the heck out of everyone.  He can have 1 day of diarrhea with 5-8 pure liquid HUGE stools and then the next day be so backed up that his belly looks 8 months pregnant.  He's still shedding intestinal lining and tons of mucus.  His GI doc has decided to try putting Eli on metamucil.  He's hoping that this might bulk things up but keep them moving.  So far it's not working.  His GI doc is confused about what his system is doing and he's not quite sure what to do differently.

Tuesday was a quieter day at home. 

Wednesday proved hectic. We started the day with an appt to the endocrinologist.  She is happy that he has grown 3 1/2 inches in 6 months.  (we've never had growth like that).  She is however concerned about his growth hormone levels and dosing.  She's also wondering if there are some more thyroid issues involved.  Running lots of labs.  Then  Eli's cardiac monitor went off more than 30 times.  At one point in the afternoon he was bright red rashy and on fire hot.  He happened to be on the pulse ox during this time and his heart rate went up to 230's and then back to 150's and back around.  Upon listening by his nurse, she was able to hear skipping beats and his murmor going wild again.  When it finally stopped and leveled back out the redness and heat went away.

Today Eli has been off all day, bumping into things, and falling over often.  Sloppy days are always rough.  When laying on his left side his heartrate is lower, on his back it's high.  Very positional today.
We spoke with his cardio nurse and she has scheduled him with the lead cardiologist for next Thursday.  They will be running another EKG and an ECHO.  They are getting so many reading reports from the cardiac lab right now and are trying to keep up with reading all of them as they come in. 

Right now we are just hanging on and hoping that this is nothing major.  My brain keeps trying to override everything and tell me that it's ok.  That goofy things can happen and go away, never to be seen again.  The thing is I can't remember a time where something went away.  Symptoms stay, meds don't get DC'ed without getting replaced, docs never switch from primary team to consult only, equipment is never temporary.  Promises and speculations and thoughts and expectations NEVER happen.  I remember all the words.  All the feelings from the past.  I can hear all the docs saying temporary...then months later saying we are sorry but this is life now.  It's always changing.  Life is always changing and it's not fair.

Can't 1 thing get better?  Can't life improve?  Can't my little warrior get a day off??  Can't I fight these battles for him just once letting him simply be a kid?? 

We are worried.  We are unsure what's happening.  We hear the doctors speculations and thoughts.  There were 2 thoughts going into this on the first day a week or so again when he had his 1st known SVT's.  Those were A. It's a 1 time thing, a fluke OR B. It's Mito.  They thought it's possible that the mitochondria are breaking down and causing road blocks in his heart.  (This is also what they have already wondered about occuring in his brain.)  The first day the moment I heard these I tried to will myself to believe that "A" was possible.  That was the reason for the SVT's that day.  But my inner heart and soul felt that it wasn't so. 

Here we are a week or so later and we now know beyond a shadow of a doubt that it's not a 1 time fluke.  It's our new life.  I don't want a new life.  I want to go back.  Back to 17 weeks of pregnancy.  Back when I would lay there feeling the flutters of my little one growing in my belly.  Back when I rubbed my belly imagining raising my little one.  Back before the 18 week ultrasound when our world began to crumble.  I want our old life.  Our innocent healthy life.   Back when the hardest thing was picking out the perfect baby names.  I don't want this.  I don't want the names of medications and diseases and doctors and protocols to be the things constantly filling my waking thoughts.

I'm terrified.  Heart progresssion.  I can't go there.  I can't go down that path. 
We will be talking with his palliative care doctor and his primary care doctor more tomorrow and hoping to get some basic answers before cardio next week.  Please keep our little guy in your thoughts, and our family too.  This isn't the path we want to even be glancing down.  Not now, not ever.

We will update as we know more.

(In other less important news I seem to have picked up a cold and UTI.  The kids are possibly getting the start of my cold.  Spring break is winding down and the kids are back to school on Tuesday.)

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