A Lil' Boy's Journey to Live….

Archive for November, 2016

Visit with Lung Transplant @ChildrensPhila ❤

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 .. 💚

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Riley met WWE Wrestler Finn Balor .. 😀

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 😉

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