A Lil' Boy's Journey to Live….

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Discharged from @ChildrensPhila .. β€

Riley has been discharged! Some adjustments were made to his nutritional intake unrelated to the infusion therapy. He’ll return Monday to check labs. πŸ’š

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Bone Infusion Therapy stay @ChildrensPhila .. πŸ’š

The face you make when your nurse is still able to draw labs off your IV.

~ Riley’s had another pretty good day. His calcium level is still fluctuating some so they are pumping him full of calcium. If we can get to Friday evening without any added side effects he should be able to be discharged. If not they’ve mentioned Saturday because Riley got the infusion so late on Tuesday. As always we will do whatevers best for Riley. ❀

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

All settled in @ChildrensPhila .. β€

Riley is finally settled in. Unfortunately after arriving Tuesday afternoon we had to wait a couple hours to actually get to the floor. By then shifts were changing and there were more delays. Riley finally started his Zometa infusion at 10:40pm after doing labs and starting a tylenol prophylactic. He does not appear to be having any allergic reaction .. Thank God. The possible side effects usually take about 24 hours before appearing. Obviously the Hope is they don’t appear at all! If they do we will deal with them as they come.
Thank you ALL for being on this #Journey with Riley! β€πŸ’š

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

Swallow Study @ChildrensPhila .. β€

Riley had his Swallow Study today. Unfortunately it did show that Riley is aspirating when he drinks. At first it was thought to be thin liquids but now they are not sure if he’s also aspirating thickened liquids. Given the results Riley can not take Any liquids by mouth until further notice. As you can imagine Riley isn’t happy about not being able to drink. The team will discuss the results and get back to us on Wednesday with a plan. As mentioned in a previous post aspirating can cause chronic rejection. Riley has had mosaic air patterns in his lungs for a couple years now. At his last CT in March the mosaic air patterns were noted as being more prominent. Not sure what all of this means moving forward but will update when we know more. ❀

~ Pic is from while waiting to do the swallow study.

Visit with Orthopedics! Childrensphila .. πŸ’š

Riley’s appt with Orthopedics went well. Not really any changes. Pic on the left is November. One on the right is today. No new fractures noted. Dr Deeney agrees that the infusion therapy is a good idea. He agrees it’s not without risk but if it helps with Riley’s bone density it’s worth doing.
Riley’s next scheduled appt is in 2 weeks for the swallow study to check if he’s aspirating as the lavage suggested. Will updated. πŸ’š

Update .. ❀

Update .. Riley will be admitted to Children’s Hospital of Philadelphia April 23rd for his bone infusion therapy. All goes well he should be discharged on the 26th. Next Tuesday Riley has an appt with Orthopedics to check on his fractures and progression of his scoliosis. Will update next week. ❀

Update after previous post.

After posting about Riley’s biopsy results we received an email from lung transplant saying there was one more thing that recently resulted from Riley’s bronch that they wanted to discuss.
Some of fluid tested from Riley’s bronch is concerning for aspiration. As aspiration can cause chronic rejection they would like to get some more information to ensure Riley is not aspirating.
They would like Riley to complete a swallow study. The request has been put in by transplant. We will call to schedule the study. Will update when more information is available.
❀

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