A Lil' Boy's Journey to Live….

10/24/09

Hey Riley Readers………So yesterday we went back to CHOP.  First Riley was evaluated by the feeding clinic.  He was accepted into the day hospital feeding clinic.  Now, though, we still have to wait.  First there is a small waiting list.  There should be an opening in Nov. or Dec.  However…..with Riley being listed for transplant we can not really afford to have him in the hospital right now because the Flu is spreading like wild fire.  Transplant wants us to wait at least a couple wks for the worst of it to hopefully pass.  After then….who knows, but what is important is that he has been accepted into the program, and has had his initial consultation.

As far as transplant…..we were with the lung transplant team for about 3 1/2 hrs.  Spoke to the Social Worker, Physical Therapists, Nurse Practitioner and of course Dr. Goldfarb, and Dr. Hanna (Cardiology).  Riley also got the H1N1 Vaccine when we were there.  Regardless of the controversy behind H1N1 Riley can’t get the Swine Flu….any flu for that matter.  We need him as healthy as possible.  As far as the listing itself…..they are just crossing their T’s and dotting their I’s.  They are also submitting paper work to the organ donor network to get Riley on a Level 1A.  That would be the highest priority listing. 

Other then that….we don’t have another appt. scheduled right now.  They want to wait for the flu to slow down some in the hospital.  They will call us to schedule the next appt.  Most likely it will be in three wks.  After that he will have another Cath. in two wks. 

Bottom line…..things are getting a little crazy.  We now have three tanks of Oxygen in the house.  Theory being that Riley will eventually get sick and need the oxygen.  They believe, too, that Riley will eventually need O2 at night while he sleeps.  All that being said…..we are pushing forward!  Riley WILL get through this!!  There is no other option!!

 

One last thing…..as if the Croneberger family has not been through enough lately…..my little sister, Katy, who lives in Nevada in the Navy was riding her Quad last night and apparently her brakes didn’t work and she somehow ended up flipping over the front!  She shattered both of her elbows, and had surgery on them last night.  I believe my Dad will be flying out there tomorrow.  So if you decide to pray for Riley tonight please also pray that my sister makes a speedy recovery!!  Thank You 🙂

Picture from the summer of Riley and Aunt Katy

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