A Lil' Boy's Journey to Live….

​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 .. πŸ’š

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 πŸ˜‰

​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 .. πŸ’š

​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/

Riley had a pretty great visit with Cardiology. Heart function looked Beautiful!! His blood pressure has been slightly elevated so they increased his Enalapril dosage. If it continues to be elevated we will consult with the HAVE team. There are nephrologist on the HAVE team. We need to be mindful of Riley’s kidneys. Especially since he had two bouts of renal failure post transplant.
Riley did not have labs drawn since he had them done recently. So next visit with pulmonary cardiology with throw in a BNP and liver panel in addition to his regular pulmonary blood work.
Till then .. Happy Summer 🌞

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http://www.chop.edu/centers-programs/hypertension-and-vascular-evaluation-have-program

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Sometimes it’s the little things ~ Riley has asked recently about trying to take his meds by mouth. He has always taken them via gtube. I remembered a conversation with the heart team were they mentioned a med that the heart transplant kiddos couldn’t starting taking till they were 8 .. per the FDA .. that was a good transitional med. So I contacted transplant and they sent over a script.
Riley is Super Excited to share that he took his First med by mouth today! On the first try!! It is called Pravastatin and he took it in pill form!!
So moving forward we will continue with the Pravastatin nightly and assuming he continues to do well we’ll slowly start to transition his other meds to pills.
Yay for Riley Sometimes it’s the little things ~ Riley has asked recently about trying to take his meds by mouth. He has always taken them via gtube. I remembered a conversation with the heart team were they mentioned a med that the heart transplant kiddos couldn’t starting taking till they were 8 .. per the FDA .. that was a good transitional med. So I contacted transplant and they sent over a script.
Riley is Super Excited to share that he took his First med by mouth today! On the first try!! It is called Pravastatin and he took it in pill form!!
So moving forward we will continue with the Pravastatin nightly and assuming he continues to do well we’ll slowly start to transition his other meds to pills.
Yay for Riley .. πŸ˜ƒ

β€πŸ’šπŸ’œπŸ’™πŸ’›β€πŸ’šπŸ’œπŸ’™πŸ’›.. πŸ˜ƒ

β€πŸ’šπŸ’œπŸ’™πŸ’›β€πŸ’šπŸ’œπŸ’™πŸ’›

~ Riley has been scheduled for his next Bronchosopy on June 1st.

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