A Lil' Boy's Journey to Live….

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.

Rarely does one give birth to a child and fear that they may never hear them cry but 8 years ago that was exactly what I did. I knew that I would not have a chance to hold him before he would be whisked away to begin the fight of and for his life.
The CICU at Children’s Hospital of Philadelphia had Riley in their hands long before I did. It wasn’t until he was 3 days old .. the night before his first open heart surgery .. that I was able to briefly hold my Warrior. I remember falling asleep in the rocking chair and the nurseΒ suggesting to put Riley back in his little ‘pod’. I so did not want to let go with fear that I may never hold him again.
Eight years ago it was hard to imagine that we would be celebrating an 8th Birthday! Since before he was born we have been told of all of the hurdles that Riley would have to overcome to survive. Even telling us that if he were to survive to five it would not be without having a heart and double lung transplant. Riley had his life saving transplant a month before his 5th birthday!
If I have learned anything in eight years it’s that Superheroes do exist! Today My Superhero turns 8 Years Old!!
I know how blessed I am that after that first time of getting to hold Riley .. I have gotten to hold him for eight more years .. I have surely heard him cry but most importantly I have seen him Live and Love life.
Today I am looking forward to seeing my now little boy one day turn into a young man. He will continue to Beat the Odds and will Live the Life that he so Loves to Live .. May his every day be better then the one before .. ❀ 

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Update .. It appears that Riley’s results that were posted yesterday were preliminary. The final results that came back today are different. Riley does have A2 mild/acute rejection in his lungs. CHOP believes that it was caused by Riley’s recent bout with RSV. They also believe that it is treatable with IV steroids. Therapy will take place next week.
Thank you all for your continued love and support .. ❀

Biopsy Results ..

NEGATIVE!! Riley’s Heart and Lung Biopsies are Negative for Rejection!!!!

Before Riley was discharged earlier this evening we had a visit from our buddy Dave Garrett (Respiratory Therapist). Dave has always been Great to Riley. Especially after Transplant and when he had his trach. He use to go out of his way to get Riley the colored strings he wanted for his trach changes. To match to a specific Thomas train. Even bringing them to the PCU from the 6th floor for the couple months we spent up there.
When he came to visit today he brought 2 small boxes. As we were opening e this was the first time he made two together .. A heart and lungs!
The suncatchers are Beautiful but I think almost more Beautiful is Dave hearing that Riley was on the schedule for Monday and coming into work early to see us and to give Riley his gift that he had Made!
Dave is a reminder of all the Amazing people that have joined us on Riley’s journey! We are so Grateful for you All .. ❀

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