A Lil' Boy's Journey to Live….

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 .. ❤


https://www.facebook.com/Smile4Riley/

​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!! 💚


Riley and Dr Hanna ..

​Riley’s appt went well today with Ophthalmology. As suspected he does need glasses. Also learned he has a slight cataract believed to be caused by long term steroids. The doctors really wasn’t concerned about it. We will check again in a year.

Also had a brief visit with Pulmonary. After listening to Riley they decided to start him on a round of Augmentin. Again they are not very concerned but given the length of his cough feel a round of antibiotics can’t hurt. As long as we have a Healthy boy through the holidays we are Happy ..

Update from Riley’s Pulmonary Appt .. In the big picture Riley is doing Great! We have decided to stop the Zantac. He really doesn’t throw up anymore since Transplant plus he had the Thal. Of course if we run into any issues we will start the Zantac back up to protect his lungs. For now that’s another med we can cross off the list! Yay! Riley has lost a little bit of weight since his last visit. When school started we stopped giving an afternoon bolus with the hopes that he really would start consuming more food .. Especially being around other kids that are eating. Unfortunately it hasn’t prompted much of a change. So still working on that. Along with food intake there is still a struggle with fluid intake. Riley’s BUN has continued to increase over his last several blood draws. Thankfully his creatinine has remained stable. Although rising BUN could be caused by a couple different things it’s thought to be because Riley’s not hydrated enough. We need to keep Riley’s kidneys happy so it looks like we’ll need to add a water bolus during the day. Riley still gets a 10 hour feed at night but that along with what he drinks during the day just isn’t cutting it. Everything is a balancing act.

Riley’s PFTs looked good as did the rest of his lab work. Thankfully his Tacrolimus level is where it needs to be so he does not need to do labs again next week. Yay! Also we brought Buzzy along with us for Riley’s blood draw. Placed it between the pain and the brain and it certainly seemed to help! If your not familiar with Buzzy please check out they’re page! Buzzy is Great for our Warriors who have to have frequent labs or IVs or injections! So glad we got one!!

Thank you All for being on Riley’s Journey! 


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

Riley was Super Excited to meet Finn Balor today!! Of course it was a very brief visit! Hoping one day to get Riley to wrestling so he can experience it in person. For now he loves playing with his guys and watching wrestling on TV …or his IPad 😉

​Riley had his 3 month check up with heart transplant on Monday. Dr Rossano said heart function looked Great on echo. Most of Riley’s labs looked good. His Tacrolimus level was high so we’ll decrease the dose and check it again next week. Riley’s ANC (neutrophil count) which is one of the components of your white blood cell count that helps you fight infections was low. The WBC itself was not low .. just this component so we will also check another CBC on Monday. If lowering the Tacrolimus doesn’t help to bring up the ANC we will then have to consider lowering the Bactrim and/or Imuran doses. Everything is a balancing act. Hopefully we can just get it all figured out so it doesn’t cause any bigger issues! 

Riley is super excited to be changing more meds .. Enalapril and Imuran .. from liquid (gtube) to pills! 

On a final note. We ran into Mike from camp and his Mom while visiting transplant. Riley loves being able to go to CHOP now and see other kids that he knows! As his parent seeing him interact especially in the CHOP setting as an 8 year old is really just so Amazing! Riley has been visiting with CHOP cardiology since before he was born! Then for so many years after we would be there but he was sick. On Oxyen. Blue. Always vomiting. Now he’s there. Visiting. Looking. Acting. Being a seemingly normal little boy. We don’t know what tomorrow has in store but we didn’t think we would ever have today. Thank you to Children’s Hospital of Philadelphia and Riley’s Donor for making Everyday possible! Words could never express our Love and Gratitude .. ❤
#GiftofLife

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

​Thursday was a big day in our house! Riley went to school for the first time Ever! Riley has had home bound instruction to date. 

Riley is three and a half years post Bilateral Lung and Heart Transplant! This is what it’s all about .. Living! Riley is loving life and can’t wait for Monday to go back to school!

Thursday .. Today .. Tomorrow .. None of it would be possible without Riley’s donor who gave him the Ultimate gift along with our Amazing teams at CHOP! Dr Spray .. Dr Hanna .. Dr Goldfarb .. Dr Rome .. Dr Stevens .. Dr Nance .. Dr Kreindler .. The entire heart and lung transplant teams .. The Amazing staff in the CICU .. PCU .. CCU.. PICU and CPRU .. All of the different specialities that Riley sees. They have all been on this Journey with us since before Riley was born and continue to be by our side every step of the way! Thank you could never truly express our Gratitude for all that you have done and continue to do for Riley!!

https://www.facebook.com/Smile4Riley/

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