A Lil' Boy's Journey to Live….

Update .. Riley’s bone infusion on Monday went OK. There was a little bit of a struggle getting the IV which we quickly realized was because the person doing it was training. One of the biggest reasons for doing ultrasound guided IV placement is to reduce the anxiety Riley has with getting IVs. Next time we’ll be sure to confirm the person doing it knows exactly what they’re doing.
Riley had blood work done today to check his calcium level which can be effected by the Zometa. It was low. So they have extended taking the calcium supplements along with ordering another blood draw for Friday.
Riley thankfully hasn’t had any other side effects from the infusion.
Hopefully Friday’s calcium levels look good and we can pull back on the calcium. All the calcium does mess with Riley’s stomach.

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

As you can see Riley is Very Happy to be brace free .. for the most part. Orthopedics would still like him to wear the brace for gym and/or any activity he’s at risk given his history of fractures.
Riley will have his Zometa infusion on the 30th, and Orthopedics would like one more xray (when he does pretesting) after the infusion.
Assuming everything still looks good on the xray in March Riley will be cleared from Orthopedics for the arm fracture. Riley will still see ortho though for his scoliosis and history of fractures.

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

CT and CTA

Cath and Bronchosopy

@ChildrensPhila ❤️

Having to be in the hospital for #Christmas is never fun, but being able to open a gift that was on the top of your list certainly helps! 🎅
Riley’s fever has not returned. Still continuing the IV antibiotics and stress dose steroids until tomorrow. Assuming nothing changes the plan is to discharge Monday. Fingers Crossed!

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

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