A Lil' Boy's Journey to Live….

Archive for October, 2019

Riley’s @childrensPhila for Bone Infusion Therapy.

Riley was admitted Monday after his sedated MRI. There was some struggles with getting his IV. Please see Riley’s Instagram or FB page for complete update at Smile4Riley.


In the big picture Tuesday was a pretty good day for Riley.
Riley was again given some options in regards to getting a blood drawing IV. He chose to get labs once daily and finger sticks every 6 hours rather then getting another IV placed. Of course when they came to draw the labs we had to remind him this is what chose. Riley does amazing with labs outpatient but while inpatient he’s struggling. Needless to say they got the labs.
Hoping to see Dr Goldfarb Wednesday but spoke via email. Riley does not have chiari malformation! In any other situation that would be a Yay but in Riley case it was our last hope to finding a cause for the aspirating. Riley doesn’t know the MRI results yet. We will have to break the news to him Wednesday but just want to talk to Dr Goldfarb in person first. Not that anything would have changed. In the end it comes back to Quality of Life and what we as Riley’s parents and what Riley wants to do. There are a lot of things in Riley’s life that make him happy and to this point we (including Riley) aren’t willing to give that all up for the one pleasure of drinking.
On a happier note .. Riley hung out at the #RyanSeacrestFoundation studio for a little while in the afternoon. Of course he was checking out all the #WWE superstars that have left autographs and even a belt on the wall. He was soooo Happy to see his Buddy/bunk mate/child life specialist Eric from heart camp while at Ryan Seacrest’s studio!!! To top it off we played some bingo and Riley won three times!!
Fingers crossed that Wednesday is a good day. He will be going into 48 hours since the infusion so if side effects are going to be an issue this would be the time they would usually start appearing! Hopefully if there’s any side effects it will just be in his calcium levels which are being monitored closely and can be adjusted.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.


Tag Cloud