A Lil' Boy's Journey to Live….

Archive for February, 2010


I just wanted to post that I just spoke to Transplant.  Riley has a runny nose, and we have to keep them informed of everything.  Anyway they told me that there has been 2 offers for Riley in the last week!  The first….the surgeons believed the heart was a little to small, and the second offer the lungs weren’t good enough!  I’m just glad to know the offers are coming!  That pager could go off at any time!!


Ok….let’s start, again, with sorry!  Sorry for not updating!  I’m glad, though, that Chris kept up with the updates!  

Now…Thank you to everyone who was a part of trying to give my family a great Christmas.  Thank You Somerdale Park School, Bancroft, Coldwell Banker, Rhonda Thompson and It’s My Heart!  It’s My Heart pulled off a wonderful surprise for my boys.  Fire trucks…lights…Santa…and lets not forget about the news.  It was GREAT!  Thank you all!!  Thank you, too, to the news viewers who sent gifts and donations after seeing the broadcast!

Soo…Chris updated pretty good as far as what has been going on lately.  Riley did have the Nurovirus which got him admitted to CHOP.  We were there six days for that.  While we were there he had a chest x-ray which showed haziness in his right lower lobe of his lung.  I knew that was a sign that his other vein was gone:-(  They scheduled Riley for a Cath that following Monday.  They wanted us to stay for the wkend, but they agreed to let us go home for two days.  I felt bad having to bring him back Monday and having to get reIVed, but he got to go home sooo.

The Cath took about five hours this time.  Dr. Rome did find that Riley’s right lower pulmonary vein was gone, and that the two remaining veins are beginning to narrow.  He ballooned the two remaining veins and attempted to balloon those veins inside the lung, but he ended up puncturing the vein.  He plugged it, and they monitored him for the night and it was ok.

Now we still continue down the same path.  The fact is that for every five heart offers they get only one will have a good set of lungs to go with it.  So there no way to even try to speed the process.  We just have to pray that Riley gets his new heart and lungs soon!  Not knowing what will happen after transplant is really scary, but right now…Riley is dying and our only hope is transplant.  He will beat the odds and live a long happy life!!

One last note…..I do have a Facebook account and I do tend to put Riley updates as my status.  It’s just convenient because I can text my status from anywhere.  That being said….if you have a Facebook account and would like to be my friend so you can see those quick updates just send me a request.  Put the website or something in the message so I know why your sending the request!  I’m under Carol Croneberger O’Brien.

Oh my….I almost forgot!!  Thank You to Patty who headed up a fundraiser for our family last wkend at the Deptford Bowling Alley.  It was GREAT!  Thank you, too, to everyone who came out in support and donated your time and energy to our family.  Especially since we are strangers to almost all of you!!

Thank You all for your Love…Support and Prayers!

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