A Lil' Boy's Journey to Live….

Archive for November, 2008


Aunt Terry stopped by today for a visit.  She brought along with her some donations.  One from Janice…Thank you, and donations from a bucket that is set up at the Lil’ Deli on the corner in Riverside.  Riverside is a little distance from us, and knowing that people, no matter how far away, care means alot.  Thank You!


Where to begin?  First…thank you to Julia for the BEAUTIFUL crib!!  Also Thank you to anyone who donated to Julia to help to get the crib.  Thank you to Ann from GCIT for your donation to Riley, and Thank you to School Based Youth Services at GCIT for the gift card to Shop Rite.  We also have received the check from the coin drive at Somerdale Park School.  Thank you to everyone who contributed and/or allowed your child to bring in their change.  We also received a donation from Mr. and Mrs. Dow when we got the check from Somerdale Park.  It is dated September, but we did just receive it, sorry for the delay in thanking you, but Thank You!!
Yesterday we saw the GI at CHOP.  We are going to add microlipids to his bottles to try to fatten him up.  We are also upping his Lansoprazole and Zantac to try and control the vomiting.  If these attempts don’t work we will try an NJ tube.  It is like a NG tube that goes through the nose, but it bypasses the stomach.  Hopefully, if need be, that will stop the vomiting.  We will save the Nissan and Gtube as a last option.
Today Riley had an echo and a cardiology appt.  He weighed 13lbs 5 oz, and is 25.4 in.  His pulse ox was 86%.  The echo didn’t seem to show any further narrowing.  I truly believed it wouldn’t after only two wks with the stents.  He will have a sedated echo on Dec. 17th.  The wk before Christmas.  That will be the test.  It usually takes about 4-6 wks for the obstruction to appear on echo.  WE NEED A CHRISTMAS MIRACLE!!  Something new today, though, is that Riley’s heart is "thickening."  If you look at his chest the left side is larger then the right.  Reason….the heart is a muscle, and like any muscle you work out it gets larger.  Well Riley’s heart is working hard to keep the blood flowing with only one ventricle.  Result….thickening.  Soooo…we have added a new med. Enalapril.  I think thats spelled right….Im reading it off a script.  Anyway…it could cause it’s own problems like turning him blue…lowering his pulse ox, but he needs it or his heart will continue to thicken.  Hopefully his dose is low enough not to cause a bad reaction, but still be able to help.
Dr. Szwast would still like to move forward with the Ladds Procedure for his malrotation.  We have to see first how the veins look in December.  She also would like to attempt to list him for a transplant if his veins remain stable.  Sooo….as always….it all depends on the veins.
Until next time….Happy Thanksgiving!!


I wanted to let everyone know that my grandmother is out of the hospital.  She actually got out on Friday.  She is recovering well.
*Thank you to Susan Leach and April Scoggins for your donations to Riley.  April….love the picture!
*Thank you to Darren Leonard who got us a hall for Riley’s benefit.  It will be May 16th so mark your calendars.
*Also Thank you to everyone at GCIT who is putting together the "Recipes for Riley" cookbook. 
Tomorrow we go to CHOP to see the GI.  Really just to see if he has any ideas to help with Riley’s reflux.  We already know what procedures he needs….we just cant do them right now.  Wednesday we also have an appt at CHOP for an echo and to see Dr. Szwast his Cardiologist.  The echo cant possibly show narrowing after only two wks….right??!!!
So hopefully it will be an uneventful day.  The echo that will be scheduled for right before Christmas is the one I dread.  We have to have a Christmas Miracle!!!


Pic of the Boy!!

PS….Riley’s Gee-Gee, my Mom-Mom, is in the hospital.  My Dad called an ambulance for her yesterday.  I spoke to her today.  She seems to be doing ok.  May be home on Friday.  She was dehydrated, her pulse ox was low. and she was having some other issues.  She has been told to gain weight.  Now I have a grandmother and two children who need to gain.  I wish there was a place to go and donate!!  Please keep her in your thoughts as you go through your day.  Thank You!

This is Mom-Mom last Christmas when Darren bought her some "BLING"

Love you!!!


Here are a few pics we took at CHOP when Riley was getting ready for his cath.
Not to happy in the last one!

This is Riley and Paula.  One of his nurses post cath.

I would also like to Thank everyone at GCIT who helped to get Riley a pulse ox.

Chris, Jamie, Matt, Kyle, Matt, Emily, Travor, Michelle, Victoria, Brian, Kelly, Brooke, and Katy.  Also Thank you to Nonin Medical who donated a pulse ox to Riley.  Both ended up happening at the same time.  It is great to have two, though.  Backup.  You are all fantastic people who have helped us out beyond what words can explain.

Thank You:)


We are home from CHOP.  We got delayed.  First they increased Riley’s Plavix so we had to wait for that.  Then Riley decided he wasn’t eating.  They started him on IV fluids.  They finally decided to let us go after telling us that if Riley continued not to eat through the night to call in the morning.  Anyway…Darren came to pick us up, and I told him to try and feed Riley.  Needless to say he drank 4 oz.  Now he just needs to continue to eat through the night, and we’ll be good. 
Now we wait AGAIN!  It really sucks!!  Riley just HAS TO get through this.  The stents HAVE TO work.  There is no other option!!


Riley is out of the Cath lab.  It took about 3 hours.  Dr. Rome ended up stenting 3 veins instead of 1 or 2.  As usual everything looks good right now.  It’s a wait and see as to what the veins will do as far as narrowing.  
There is one good note out of the day.  They did not lose Riley’s pulse in his feet this time.  That means we should be able to leave tomorrow.  Riley is on antibiotics for tonight because of the stents, and he is also receiving heperin as a precaution.  Dr. Rome also wants to get his Plavix level back up since he has been off of it since Sunday.
Other then that he is in the CPRU recovering.  He is not happy at all.  He has to lay flat for 6 hours.  Yeah….right…they are letting Darren hold him right now, but flat on his lap.  That wasn’t flying when I walked out.  Riley likes the shoulder.  
So as I’ve said a million times….the journey continues.  Please continue to pray…loud…..Riley has to defeat the odds!!! 


Hello…somehow I found a computer in the CPRU that lets me blog. 
Riley went back around 12:45.  It will be a couple hours.  We spoke to Dr. Rome before he went back, and I could have done without that chat.  The bottom line is he feels that after the stents are placed we have exhausted our options. In other words if the stents become obstructed, which is possible, there is not much else they can do.  They can go in and balloon the stents, but to what end.  He doesn’t feel it’s fair to the child to continue to put them through procedures if they are not going to help.  We have already done surgery, and cutting balloons.  This seems to be our last hope.  It has to work!  I just cant handle the thoughts that are going through my mind.  Riley has to be here.  Please pray for long term success.  If I can’t get on again Chris will update. 


How could be possibly go to CHOP tomorrow without, first, thanking everyone for today?!  Smile 4 Riley Day at Applebee’s was fantastic!  The kindness of everybody was overwhelming.  It was so great to see everybody.  We got to see alot of people we haven’t seen in a while, people we see all the time, and people we never knew before today.  The outpouring of support from strangers was unbelievable!  Thank you to all of you who are now visiting Riley’s site for the first time.
We have a few extra special thanks….which is hard to do because I don’t want anyone to feel that we aren’t greatful for anything they may have done…that being said…..Thank you to Jackie and Dennis….you guys we’re awesome today!  The both of you never fail to be true friends.  Thank you to Chris who never stopped the whole time she was at Applebee’s today.  If she wasn’t handing out flyers she was taking pictures.  I couldn’t have asked for our relationship to have turned out better.  Thank you to my parents who came and brought my grandmother.  That was great in itself to have my grandmother there.  Thanks also for dinner and for taking Christian home with you.  I think everyone I’ve mentioned is part of Team Riley.  What a team we are.  Tomorrow our captian will go in and show us what he’s made of. 
There are a million more thank you’s to say, but Im about out of time.  It’s 11:30pm and I still have to finish packing for tomorrow, and feed Riley his last bottle before fasting.  I will post a few pics, but there are many more.  I have lots from lunch, but I only have time to put up a few, but Chris and Dennis have more of the evening to put up. 
Thank you again to everyone, and pray for good results for our little Riley tomorrow


Riley’s Cardiac Cath has been scheduled.  It will be next Wed. the 12th.  It was almost on the 10th, but they did the 12th for us.  The 10th would have meant that he wouldn’t be at Applebee’s on Tuesday.  They even scheduled pretesting for the 10th instead of the 11th.  Part of me feels bad because he needs the stent, and sooner would probably be better, but if he HAD TO have it on the 10th they wouldn’t have said the 12th was ok.
That’s pretty much all that is going on right now.  Trust me, though, that’s enough! 

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