A Lil' Boy's Journey to Live….

Archive for August, 2021

Lung Transplant appt @ChildrensPhila 💙

Riley’s appt with Dr Josephson (lung transplant) went well. Pulmonary function test results were about the same as they have been. Labs all looked good except for the tacrolimus level (immune suppression) which was a little high. So we have lowered the dose and will check it again next week.
When Riley did labs they also collected for the Covid vaccine study. Hopefully sometime in the fall we’ll have a better idea of how much protection the booster shot is providing.
We don’t know anything in regards to the renal ultrasound other than you could see they were measuring cysts. Question is how do things look compared to the previous ultrasound. Surely if there is anything concerning we will hear from nephrology. If we don’t hear anything Riley has an appt already scheduled for October.
For now .. Riley is Super Excited to go back to school (in person) on Thursday! Yay to some kind of normalcy not just for Riley but for All the kids!

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

* 1st pic is with Dr Josephson.

* 2nd pic is with Mitch .. one of Riley’s favorite phlebotomists.
Next pics are doing PFTs and just being Silly Riley.

Booster Shot

Riley has received his Pfizer booster. Hopefully this will create the antibodies needed to protect Riley from getting Covid .. again.

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

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