A Lil' Boy's Journey to Live….

Archive for July, 2009


I wanted to let everyone know that Riley was admitted to CHOP
yesterday, through the ER.  He had a fever that wasn’t coming down
with Tylenol.  Once it had reached 100.7…..it was time to call the
fellow anyway.  She, of course, said bring him in. 
Remember…….Riley doesn’t have a spleen! 
In the ER his temp had reached 103.  After that it started to come down. 
He was started on IV antibiotics in the ER, and was just given another
dose a little while ago.  Now we wait for test results.  They test
everything that you can imagine.
If it’s anything like the past, though, everything will come back negative,
and we’ll go home tomorrow.  His fever is already gone, but we have to
see if there is an answer to what caused it.  (probably his stay earlier in
the week in the CICU!!)  I may be going out on a limb here, but I’m gonna say
he’ll be discharged tomorrow.
Aunt Terry visiting Riley!!
Darren being Darren and playing in the crib!


Reach For The Stars:)


Riley is out of his echo. 

Everything seemed to look good.  It appears to actually be the best echo yet. 

Three of the veins looked good, and one looked moderately obstructed.

Mind you the three are still mildly obstructed, but haven’t changed much since

they were last looked at.  Dr. Szwast thinks we can wait till the last wk in August to

do another echo.  6 wks will be the longest we have every gone!!  We could be on the

verge of something good here.  PRAY!!

Soo..tonight Riley stays in the CICU.  Its alittle rough because he is in a pod, and not

in a private room, but we got a TV from ChildLife, and he is watching Blue’s Clues on DVD.

I have no idea how the rest of the day or night will go, but hopefully uneventful, and

we’ll go home tomorrow morning!

Until later…


Hello to all…..we are at CHOP.  Riley is having his sedated echo as I type this.
I just wanted to let everyone know that Riley will be staying the night in the
CICU.  This will happen, moving forward, whenever Riley has a sedated echo….
until he has a Cath. that shows his pulmonary pressures are lower. 
He also had to get an IV. 
Sooo….we will spend the night so they can monitor Riley.  
The whole thing seems crazy…..since this is probably Riley’s 10th sedated echo,
but I will do whatever is best and/or safest for Riley.
One last note…..one year ago, today, we were sitting in the same place.
Riley had his second open heart surgery, his sutureless repair, on July 14 2008!
That’s all for now.  I will update again when I have a chance and know the results
of todays echo!
Keep Riley in your prayers!!
PS…Thank you all for voting for Riley in the cutest Baby Contest!! 

update 7/8/09

First let me start by saying I’m sorry for not being better with the updates on Riley!!

That being said……Riley had a Cardiology appt. today.  His echo was unsedated and Riley screamed the minute the tech touch him.  Sooo…now we will go back next Tuesday for a sedated echo.  FUN! 

We did learn that Riley is up to 18 lbs.  HOORAY!!  He is still not up to a full feed, yet, but he is still putting on the weight.  Probably because we went from a 24 calorie feed to a 30 calorie.

On another note…..I have a much over due THANK YOU!!  About two wks ago Riley’s speech therapist, Chris, stopped by.  She said she had something for me to read.  Well…..it’s a letter in response to a letter that Chris wrote to the Pray Child Foundation on behalf of Riley.  She had asked me months ago if it was ok, and I said yes…thinking it was for them to pray for Riley.  The more prayers the better…right!  This was a little more then that.  She had told them about Riley, and gave them his website.  Well….they sent a VERY GENEROUS DONATION to Riley!!  I was speechless!!  Chris we love you…truly!!!  Pray Child Foundation…..Thank You for caring for our son.  The kindness of all of you will not go unforgotten!

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