A Lil' Boy's Journey to Live….

Archive for August, 2008


Gotta Love Em’!!


Riley’s Cardiac Cath. has been scheduled for next Friday the 5th.  He will do pre-testing on Thurs.  Chest X-Ray, lab work, and an EKG.  We will find out Thurs. wait time the Cath. is scheduled for.  Everythings the same as before.  Crazy, though, that it wasn’t that long ago that we were doing this.  Things have to get better!  Pray!


Ok…so we are doing the Cardiac Cath. next.  Sometime within the next wk or two.  Dr. Spray doesn’t believe he will be attempting to repair the veins again after the cath.  The thought being that they were just repaired a month ago, and are already obstructed.  This will, probably, continue to happen.  HORRIBLE!!!  Dr. Szwast believes he will most likely end up being listed for a heart transplant.  SCARY!!!  We will do whatever it takes to keep our little Riley with us!  Of course nothing is set in stone.  Things can always change.
Until later……please pray!!!!!!


So…we just got home from CHOP.  We are back where we were in the beginning of July.  Riley’s Pulmonary veins appear to be obstructed…AGAIN!  I am waiting for Dr. Szwast to call me.  She was waiting to talk to Dr. Spray about the next step.  She believes it will be a Cardiac Cath., but then what?  He may need surgery, again, on his veins, or he may get listed for a transplant.  Another wait and see!  Just can’t believe there is obstruction again…so soon.  More scar tissue!!
On another note….his BP was 116/72, wgt. 10 lbs 14 oz., hgt. 22.5 in.  His pulse ox is down in the low 70’s because of his obstruction.
I’ll update after I know more!


Tomorrow Riley goes to CHOP.  Pray, Pray, Pray for an uneventful day!!!


Today Riley had a weight check.  It was rather disappointing.  He only gained an ounce, and even that is pushing it.  He is barely even on the chart when it comes to percentiles.
So now we wait and see what happens next wk when we go back to CHOP.  His meds. may be altered, may move up to the 27 calorie diet, from 24, may be admitted.  Not to mention we have the Echo next wk, too.  So…yeah, I have a little anxiety about Wednesday.  Keep you fingers crossed that the Echo is ok, and that we able to do something, at home, to help him gain weight.  The first thing that needs to be done is stopping the throwing up.  The big question is how is that going to be done.  We have already tried multiply things.
I’ll update you later!


Today Riley had a weight check.  He is now 10lbs. 10oz.  Not much of a gain, but it’s a gain all the same.
Just to let you know what kind of wk it’s been.  Our AC hasn’t worked since last Thursday, and out dishwasher motor needs to be replaced, again.  The AC guy came yesterday, and I won’t even get into what that cost.  Know what, though, these things would have had me freaking out before April 4, but now they are minor.  As long as Riley is here, and growing, the rest doesn’t matter anymore!
Also…I want to thank everyone who has been signing Chris’s petition for the Extreme Makeover.  The thought of that happening is unreal!  It would eliminate alot of worrys, though, and would let us focus more on Riley then our living situation.  Thank you!

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