Riley is finally having a better day! His fever has been down since late last night. The cough has arrived so we have increased his Albuterol. He tolerated his overnight feed at half strength so the plan is to go to full strength tonight. All goes well and Riley will be discharged Saturday after rounds. Yay!! ❤
Not to much to update right now. Riley’s fever has been up and down. Right now it’s down to about 100. A couple hours ago it was over 103. He wasn’t able to tolerate his gtube feed last night so he ended up getting Pedialyte. He seems to do ok eating orally but unfortunately Riley just doesn’t eat enough yet so most of his nutrition comes from his overnight feeds.
So we will see how today goes. Its really all about just supporting him as he fights through the Paraflu. We have cut his azathioprine dose in half to give his body a little bit more strength to kick Paraflu’s butt!! Will update if anything changes .. ❤
Shortly after coming home from school on Tuesday Riley stated that he didn’t feel well. Took his temperature and it was up over 102. A call was made to lung transplant and they said to bring him to the emergency dept at CHOP. Many test results are still pending but his white blood cell count was elevated .. Indicating that he’s trying to fight something off. So Riley has been admitted to 8 south. Will update when we know more!
Please visit Riley’s fb page https://www.facebook.com/Smile4Riley/ .. ❤
Great Story by our friends at the Courier Post on Our Riley! Includes videos and pictures from throughout his Journey .. ❤
Sunday we Celebrated 4 Years since Riley received his #GiftofLife .. Heart and Bilateral Lung Transplant!! Today and Everyday would not be possible without the Selfless decision of another family to donate their child’s organs! Words could never Truly express our Gratitude for Riley’s donor and their family! Thank you also to our Amazing team at Children’s Hospital of Philadelphia .. Dr Spray .. Dr Rome .. Dr Hanna .. Dr Goldfarb .. Dr Kreindler .. Dr Rossano .. Dr Lin .. Dr Nance .. Dr Javia .. Dr Stevens .. ALL of the doctors and nurses in the CICU .. CCU .. PICU and PCU and the transplant nurses who are still just a call away if we need them! Thank you .. Thank you .. Thank you .. ❤
Update from Riley’s Cardiology appointment .. It went Great!! Labs looked Good .. Echo looked Good! Riley still hasn’t gained any weight but at least this appt he didn’t lose any either!
We were given a choice of doing Riley’s 4 YEAR Bronch/Cath in March or waiting till April. We’ve always done it right around his transplant anniversary plus his birthday along with his brother and father’s birthdays are in April. So we’re gonna stick with March.
A few times during his visit Riley got to see his Buddy Dr Hanna. He was excited to share with him that he got Student of the Month but even more so to tell him about taking pills now! Riley can’t wait to go back to camp and run into the med room and pop his pills real quick like the big kids rather then have to sit there and have them all pushed through his tube.
Riley has come a long way in the last few years! Still Amazes Everyone! As we approach his 4 year transplant anniversary in March may he continue to show the world what he is made of. A Warrior who has won every battle he has fought and will continue to Defy the Odds!! 💚