A Lil' Boy's Journey to Live….

Archive for the ‘Uncategorized’ Category

Visit with heart transplant @childrensPhila β€β™»οΈπŸ’œ

Riley’s visit with heart transplant went well! Labs, echo and EKG all looked good.
Riley’s weight is still down but we’ll discuss that with lung transplant since their nutritionist is who we work with for nutrition.
We also discussed possibly combining Riley’s transplant appts, heart and lung, into a one day visit. Currently we rotate seeing each team every 6 weeks. If we change the visits it would be seeing both teams on the same day every 3 months. That is honestly the way it is suppose to be but after Riley’s rough road after transplant we requested to see a team every 6 weeks. We didn’t want to go 3 months without someone having an eye on Riley. For us it was all about beating the odds and not wanting to miss something if he wasn’t seen. Here we are though 8 years later and Riley is beating the odds! So .. in the spring we will reevaluate going to 3 months. In the spring will be Riley’s 9 year transplant anniversary. AMAZING!! Let’s get good results from his yearly cath and bronchosopy and go from there. Also in the spring cardiology should be moving to the same building as pulmonary. That would certainly make seeing both teams and doing all the testing involved with seeing each team a little easier.
Next week we head back to CHOP to see dermatology. Riley has clusters of warts on a knee and elbow. With Riley being immune compromised we don’t want to try and treat the warts ourselves without guidance from a doctor so his team suggested a visit to dermatology. This will be the 11th specialists Riley sees.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€β™»οΈπŸ’œ

Appt with Nephrology @childrensPhila πŸ’™

Try something new.

Time to try some Duocal! The plan is to stop Riley’s morning feed and instead to eat breakfast. Then eat lunch at school with the rest of the kids. After school he’ll get his gtube feed with Duocal added along with some vitamins. Riley will still need to go to the nurse at school for a water bolus since he is not able to drink for hydration due to aspirating.
Fingers crossed that Riley is able to maintain his weight/growth. Last time we tried transitioning to eating orally Riley continuously lost weight. As Riley’s parents, though, we believe it’s time to try again and made the request. We will monitor closely and if he struggles with eating enough or starts losing weight we will reevaluate.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€β™»οΈπŸ’œ

7th Grade

Happy first day of 7th grade!!

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€β™»οΈπŸ’œ

Lung Transplant appt @ChildrensPhila πŸ’™

Riley’s appt with Dr JosephsonΒ (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. β€β™»οΈο’œ

* 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. β€β™»οΈπŸ’œ

Visit with Heart Transplant @childrensPhila β€

Quick update .. Riley’s heart transplant appointment went well! Labs, echo and EKG all looked Great!! Always good when there isn’t much to update.
Riley’s Super Excited that today was his last appt before heart camp next Monday! Yay!!

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

* Riley and Dr Rossano *

Riley’s visit to @childrensPhila β€

Riley’s visit to CHOP went well. He will see Dr Mancilla (Endocrine) again in 6 months. Prior to that appt he will have another DEXA scan to check his bone density. Endocrine is extremely happy with the results of Riley’s previous Zometa infusions but with Riley still growing any new bone growth will not have been treated. So for now he will skip another infusion and see how the scan looks in 6 months. Thankfully no new fractures have been noted from CT and they’ll check the spine again when Riley has his next orthopedics appt and xray for his scoliosis.
Riley also had ‘research’ labs done as part of the Covid vaccine study he’s participating in along with additional labs that Endocrine ordered.
Flex xrays of Riley’s neck were ordered by Dr Drant (cardiologist seen for Loeys-Dietz). Pretty sure this was to get a baseline but if there is anything of concern Dr Drant will be in touch.
Riley’s next appt is in July to see Heart transplant. Then soon after that Riley will be off to Heart camp!!

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€β™»οΈπŸ’œ

End of 6th Grade. πŸ’š

Second Dose .. πŸ’š

Happy Friday! Second dose done!! Thank you to Pfizer and Walgreens for giving #Hope to brighter days ahead!

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