Tuesday, November 27, 2012

Part of the journey....

It seems that no matter how many time I hear the cardiologist say "Asher's heart function looks great", I still take Asher to his Cardiology appointments with a lump in my throat and a pit in my stomach.  I don't breath properly until he says at the end of the 3 hour appointment "Asher's heart function looks great!"....it's often a long 3 hours until that part!

Jesse and I took Asher over a week ago to his 6 month check up at the Cardiologist.  6 months is incredible considering there was a time, not so long ago, that we were in that office every 2 weeks if not more frequently!  At the end of his appointment the cardiologist decided to do a 24 hr holter to see what his heart rate and rhythm were doing.  We had reported noticing frequent runs of irregular beats and rates.  The plan had been to let him out grow the current dose of antiarrhythmia med, but the Dr. decided that didn't seem like a good plan if he was having break through runs of A.E.T (Atrial Ectopic Tachecardia). 

The Cardiologist called last night (of course at the exact second I was trying to get the kids out of the house to get Joel to his Playmakers dress rehersal!) and said he didn't like what the holter showed.  He was having many runs of A.E.T. and he was confused as to why he was.  He's on the maximum dose of his med, and it's been over 12 months since we discontinued the 2nd med to help conrol, so why now?  I offered a hypothesis that it could be his asthma meds that were introduced right around the same time as these break through runs.  He thought that seemed impossible according to all of the "literature" on the meds, but said to monitor closely now that we took him off of the asthma meds, even rate checks in the night.

Well, my hypothesis was wrong.  Asher was up in the night with irregular rhythms.  He hates to be alone during these runs and especially if it's at night.  It was a long night!  He woke up this morning still irregular. 

I feel disappointed for a few reasons.  First, I just said to myself after last week, we have no London appointments now until Spring!!!  I celebrated that even!  And now, we have to go back every couple of weeks for 24 Holters until they decide on how to manage these runs.  Not a big deal, but still I'm disappointed that the "break" I was looking forward to, isn't so much of a break after all. 

Second, it's a few days away from December.  The month of December still comes with much tenderness in my heart.  The pain of having to leave Asher in the hospital for his first Christmas is healing, but the wound is still sore to touch.  Making changes in heart meds in December causes some discomfort for me.  The thought of introducing a 2nd med or dose changes in December is disappointing.  I'd rather have a December that isn't "touched" by things that can risk hospitalization.

Third, I know we've come so far, I was especially reminded of this last week when we celebrated being down to 1 med!  Asher came home on 6+ meds!  With the daily antibiotics discontinued last week, we were so excited to be down to 1!  We now, may need to add the 2nd heart med back to his rate management.  And yes, I want it to be under control, and yes it seems "minor" in the grand scheme of things, and yes we've done 6 meds/day, so what's 2 again?  But it just adds to the feeling of a step backwards instead of forwards. 

It's also really hard to be encouraged when you're exhausted and over tired!  I do know that God is faithful, and absolutely I want the absolute best and will do anything he needs to keep him healthy and well and thriving!  I just needed to "vent" a little on the disappointments so I can move on in peace knowing that God has a plan, and I can rest in it.  This is just all part of the journey.

1 comment:

  1. Set backs are always hard. I know it is easier said than done but look at what Asher has overcome and all the little milestones that he has accomplished !!