A Lil' Boy's Journey to Live….

Archive for July, 2019

Monday @ChildrensPhila .. ❤♻️💙

Riley had an appt with heart transplant and GI on Monday with a side of PFT’s.
Riley’s heart looks Beautiful!! Echo, labs and EKG all looked Great!
Unfortunately Riley’s lung function has not showed any improvement after switching to the inhaled steroids and finishing off the Augmentin. Not much we can do as of right now anyway. Riley will have a CT in August and will be have a bronchoscopy done during the triple scope August 15th.
Riley’s appt with GI went as expected. They also want to be a part of the triple scope. They would like to check Riley’s malrotation (post Ladd’s procedure), check the condition of his Thal fundaplication, do some biopsies and place an impedance probe. The probe is placed for 24 hours to record pretty much what’s going on with Riley’s gut .. like if he’s refluxing. Riley will be admitted for the 24 hours. The doctor we saw mentioned if Riley’s still refluxing changing his Gtube back to a Jtube like he had right after transplant. We explained to the doc that a Jtube would be another Quality of Life debate. He agreed and said it may be possible if need be to then just switched Riley’s existing Gtube to a GJtube instead of just J. Our experience has been with just a Jtube that they are hooked up 24/7 to a feeding tube. That’s not the direction we’re hoping to go but won’t know until August 15th.
Before August 15th Riley has some exciting weeks ahead! The week of July 22nd Riley is headed to the eastern shores of Maryland with CHOP’s heart camp for a week! Then the next two weeks after heart camp Riley is going to Liberty Lake Day Camp. We had to move up Liberty Lake camp because of August’s procedure but Riley is just Happy it didn’t effect his ability to go to camp!!
We don’t know what the future holds for Riley but for now we can promise him a Great summer!!!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 💙♻️❤

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