Every thirty days, like clockwork, we haul Parker down to the hospital for his monthly blood draws.Â With the addition of a new medication, it is even more important we get him down there on time, or so warns our cardiologist.
BecauseÂ with the new medication comesÂ warnings of muscle breakdown.
That could be irreversible.
And in some rare cases,Â fatal.
And people actually have to wonder why I’m a quarter past crazy these days.
(ETA: Parker’s bloodwork results all came back looking grand. His muscle enzymes especially.)
Except when we get there we discover our cardiologist (who was the one pushing the warnings about all the potential side effects) hadn’t called the order for the blood draw.
No problem!Â I’m nothing if not a tad bit desperate……..uh……..flexible.
I’ll just run over to the Ped’s office and ask her to write for this blood work to be added to the regular monthly blood draws.
Except I get there right at lunch time.Â Â And so we must bide our time for an hour until the lunches have been consumed.
I find myself thinking that I’ve spent the day so far tripping over molehills.
Luckily,Â the hospital flu testing waiting area (which is right by the lab) is empty.
And our wait is short.
And the person poking Parker is very good.Â One stick, and she. was. IN!
Through his tears, Parker claps for himself.Â We all join in with him.
He’s been battling one heck of a cold for the last little bit.
Yesterday my Mom and I were out running errands when my phone rang.Â It was Parker’s surgeon.Â It seems as though the surgeon was talking to the cardiologist, who is concerned about Parker’s pulmonary hypertension values.Â (Yeah, us too.)Â The cardiologist discusses my reflux concerns, the chest xrays suggesting a recent aspiration pneumonia, and the fact that we can often see the reflux coming from Parker’s mouth.
So an upper GI is the process of being scheduled.Â But if that doesn’t show reflux (and it is notorious for not) then the pH probe will be ordered.Â If we find reflux then we schedule a Nissen.
I am thankful for both Parker’s cardiologist and his surgeon.
What would the holidays would be without some quality time spent at Primary Childrens Hospital?
We’ve had to put Parker on NPO status. (nothing by mouth.)Â You know it is getting bad when even chocolate ice cream shows up in his trach nose.
My concern is that during the window of testing, no reflux will be present.Â Because I KNOW the kid is refluxing, but any testing just reflects that particular window in time.
I’ve reworked his total feeding schedule to where I am bolusing him in smaller amounts every. thirty. minutes., except for the 2 hour food free period that his Previcid requires.
Sometimes all the decisions we need to make in Parker’s behalf makes it feel as though we are continuously trying to move mountains.
Fortunately, a sweet internet friend sent me a talk she gave at a recent Stake Conference.Â In her talk she taught about the concept of hope, and having ‘a perfect brightness of hope.’
(I have her talk, and it’s particular references to the scriptures, saved in my scriptures.Â I’ve read it so many times, and read the scriptures that it refers to so many times, that you’d think I’d had this gift for years instead of just a couple of weeks. )
Doesn’t that sound beautiful?Â A perfect brightness of hope.
Achieving this starts pretty simply.Â You make a choice.Â You make a choice to work to cultivate A Perfect Brightness of Hope.
This isn’t to say that things will suddenly be easier.
It just means that through it all I choose to have hope.
Cause Parker and I?Â We’ve got us some mountains to move.
(Want to learn more?Â Read this:Â The Infinite Power of Hope)
As always, your prayers are appreciated…..coveted.