A Lil' Boy's Journey to Live….

The next chapter.

Never imagined 15 years ago that we would be taking Riley to freshman orientation, but here we are! Preparing Riley for the next chapter in his Journey.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

Update .. ❤️

Update to Monday’s ultrasounds. The ultrasound that was ordered to check the blood vessels in the abdomen and pelvis unfortunately wasn’t able to really be done. The radiologist pretty much said that’s just something they don’t do. The reality is that when Riley had his CTA in March it should have covered abdomen and pelvis but it didn’t. Someone dropped the ball. The ultrasound was ordered to try and eliminate the need for another IV. Ultimately it seems that another CTA will be ordered in the near future, but still waiting to hear back from Dr Drant.
The renal ultrasound still showed the cysts. All measuring larger than the previous ultrasound .. along with new cysts. That being said there is no way to prevent or slow the growth of cysts. We just watch, and treat any problems they may cause. One issue could be blood pressure, but Riley is already on a BP med so that’s stable. We will check the protein in his urine the next time we do labs. It could be decades before they cause a problem. (Fingers crossed) Since there is no treatment .. if, way in the future, they overwhelm his kidneys we could then discuss dialysis/transplant. Not today .. and hopefully not ANYTIME soon.

CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

Riley’s 15!! 🥳

In the video Riley was only a few hours old! Today .. Riley is Celebrating his 15th Birthday!! Happy Birthday to the boy who Continues to Beat the Odds Everyday!

15 years ago. ❤️

15 years ago at about this time I was at work at Lourdes Medical Associates when I got a call from Children’s Hospital of Philadelphia. There had been a doctor who had threw a screw into our delivery plans the day prior, and this other doc was calling to make it right. She said .. would you like to have your baby tomorrow? Next thing I knew I was cleaning out my desk and saying goodbye to people, and a job that I Loved. I went to lunch with my sister, and went to the nail salon to have my nails removed. Tonight 15 years ago Riley was still safe inside of me. I cherished that night. The last night before my life would change Forever.
They didn’t know if Riley’s veins were obstructed below his diaphragm so we didn’t know if he would need immediate surgery or if he would even live past birth. Thankfully Riley’s veins weren’t obstructed, and he was able to wait till he was 4 days old for open heart surgery. Of course he ended up having a second open heart surgery 3 months later. Followed by years of aggressive cardiac cathing, and ultimately a heart lung transplant 10 years ago.
No one really knew how long we would be on this Journey with Riley but 15 years later he is still going Strong. ❤️

8th grade dance

Riley looking Handsome as ever headed to his 8th grade dance.

Heart Biopsy Results

Riley has been Discharged! Visually everything looked Good. Hopefully Tuesday we’ll have the biopsy and primarily lavage results.
The scope and impedance probe were postponed.

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


CT and CTA results

Riley’s CT and CTA looked ‘ok’. The CT showed some air trapping which has been present for years. It is related to the Bronchiolitis obliteran (chronic rejection). There was also a few tree in bud opacities that may be related to recent illness and mucus. It will be further evaluated when Riley has his bronchosopy and lavage.
The CTA showed dilation of the aorta beyond the donor site. Dilation has been previously noted. Doesn’t look to have changed much since last year but has gone from 2.9cm in 2018 to 3.2cm in 2023. We will continue to monitor. Riley’s right atrium was also noted to be dilated, but we’re waiting to hear back from the team in regards to that.
We have added an xray of Riley’s neck/spine to his pretesting to check the blood vessels in the back of Riley’s head/neck. Also GI will be placing the impedance probe when Riley is scoped March 6th. He will be admitted for 24 hours.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

Feeling Better .. 💙

Riley has been over 24 hours without a fever!! We are cautiously optimistic that the worst is over. Riley also says he feels better. It’s really the fever that just knocks him out. When it all started on Friday that’s how we immediately knew he had a fever before even checking. Riley only has xbox privileges on the weekends. Friday evening he wasn’t playing xbox, but rather laying on the couch. Not even touching his phone. Sure enough he had a fever. Once the fever broke he wanted to use his phone again. Lol.
If anything should change we will surely update, but for now Riley is fever free and feeling a lot better!!

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


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