A Lil' Boy's Journey to Live….

Archive for the ‘Uncategorized’ Category

Appt with Heart Transplant @ChildrensPhila .. 💚

Riley had his appt with Heart Transplant on Monday. The appt went well. Got the flu shot. Riley’s weight is holding steady at 52 lbs. Labs looked good. Except for his Tac level which was pretty high but we’ll lower the dose and check a level again in a few weeks.
Riley’s need for bone health management is still up in the air. We will see orthopedics in November and discuss further with them. In the mean time Riley will have a Dexa scan.
It’s always Great to go to Cardiology because they have been with Riley since the beginning. Everyone is always so Amazed to see Riley and how Wonderful he’s doing. Dr. Lin had even asked if she could bring in a fellow to see and listen to Riley .. This/Their/Our Miracle child who was 5 and a half years out from a heart/lung transplant! We can always count on Cardiology to remind us how far Riley has come! Not that we could ever forget!
While at CHOP we ran into Red Scorpion who is one of Riley’s Favorite wrestlers from the Monster Factory .. Riley thought it was Super cool to see the other side of Mark (Red Scorpion). The nurse who was caring for a child with a trach. Like Riley once had. Certainly made his day!
Riley also got to see one of his transplant buddies Xavier. It was Nice to see X and how Great he is doing. ❤

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

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Riley went to @WWE .. 😊

Riley went to WWE RAW on Monday night in Philadelphia. Had the Best time Ever!!

Great Night at @4monsterfactory ..

Great night at the Monster Factory! Riley Loves seeing all his #Wrestling buddies! Couldn’t think of a better way to spend a Saturday night!

Riley had CT to check for PTLD ..

Update .. Oncology looked at Riley’s CT and from what they could see they DID NOT see any PTLD! As Awesome as that is they couldn’t see Riley’s gut as they put it so they couldn’t see if PTLD is there. Soo .. Rather then put Riley through something else right now we are going to wait. We have increased his overnight gtube feeds back to 5 nights to try and help with the weight loss and will continue to keep his immune suppression meds decreased. Riley will see heart transplant in about a month and at that time we will check his weight and EBV again. As you maybe can tell this will be an ongoing thing. Forever. Depending on how things go the next step would be to check Riley’s gut which will be through a colonoscopy.
For now .. Riley is living and loving life! Happy to be back at school. We will cross the next bridge when we get there. ❤

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

Visit with Lung Transplant @ChildrensPhila 💚

Riley’s appt with lung transplant went ok. PFT’s looked good. Unfortunately Riley is down 3 more pounds. Putting weight on has been a struggle but to have lost 3 pounds since July is concerning. Reason being Riley’s EBV counts have also been high. If the EBV results come back high again today pulmonary is going to order a full body scan to check for PTLD. Just the thought is terrifying! Please cross everything you’ve got that Riley’s EBV miraculously went down and that if it didn’t the scan doesn’t show any signs of PTLD. Will update when know results.

#TransplantisNotaCure 💚

Riley and Dr Goldfarb ..

Riley ready for his PFT’s.

Visit with Heart Transplant @ChildrensPhila .. ❤

Riley had a pretty uneventful visit with Heart Transplant on Monday.
Blood work .. EKG and Echo all looked Good! Weight is still only 54 lbs but we’ve decided not to make any changes right now as far as nutrition. That may change in 6 weeks when Riley sees Lung Transplant though. For now we know he hangs out below the 5% percentile and that’s where he always was before transplant. He was so beefed up after transplant that we’re still trying to gauge where he is going to fall long term. As long as Riley doesn’t fall off the chart he should be ok.
Riley’s next scheduled appts aren’t for at least 6 weeks. So we are heading into summer on a high note. Riley is finishing up 3rd grade. Excited for family vacation in a few weeks and going to camp in August!
Words could Never express the our Gratitude to Riley’s donor and their family for making it ALL possible. ❤

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

Riley is 10!!

Riley turned 10 April 4th!!

10 years ago at this time I was trying to sleep knowing in a few short hours I would be headed over the bridge to give birth to a child that at the time was safe inside of me but would fight for his life once he was born.
Thankfully Riley was able to wait till he was four days old for his first open heart surgery but then 3 months later he was headed back in for another OHS. Soon Children’s Hospital of Philadelphia became our second home.
By the time Riley was one and a half he was listed for a heart and bilateral lung transplant! During the almost three and a half year wait Riley was on 5 liters of oxygen and having cardiac caths done every 6 to 8 weeks. He struggled with eating and walking and talking and just breathing but he was always a fighter! Every battle he faced he came out winning!
Now he is turning 10!! It’s the most Amazing thing Ever to be able to say that .. Riley is turning 10!!! I remember when Riley turned 3 and how Amazing that time was! He has beaten every statistic thrown his way and continues to do so every day!
I couldn’t be Prouder to call such a Warrior my son!
Happy Birthday to my Miracle!

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

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