A Lil' Boy's Journey to Live….

Archive for July, 2022

Heart Camp with @childrensPhila

Riley is off for a fun filled week at Heart camp with the Children’s Hospital of Philadelphia!!!

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

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FEES study @ChildrensPhila 💜

Friday Riley had his FEES study at Children’s Hospital of Philadelphia. The first thing I want to say about the study is how Amazing Riley did! We are so Proud of him for his handling of everything from the numbing of his nose to inserting the camera to his participation in the study. He truly did Fantastic!
The study did show similar results to the swallow study in that Riley still doesn’t have great control over thinner liquids. We could see the ‘penetration without aspiration’. Years prior that was true of thin or thickened liquids but Friday we tried thickener again with much better results. The liquids went right down without any pooling along the way.
So the plan for now is to let Riley drink thinkened liquids. Dr Ruiz would like to follow up with a scope in about 3 months.
There are still some things we’re trying to make sense out of. For instance .. over the last 3 years Riley hasn’t really drank other then sips that were considered a treat. Usually soda was his treat of choice. Well in speaking to Dr Ruiz we realized soda doesn’t contain anything that would increase lipid laden macrophages in Riley’s lungs. Hmm. So that would suggest the increase isn’t caused by Riley’s sips. However if Riley is drinking or eating and refluxing that could be a cause, but than there’s the fact that Riley had a Thal fundoplication and is on reflux meds. Dr Ryan (GI) did share with us at our last visit with him a study that shows no connection between aspirating and increased lipid laden macrophages. So that leads to the ultimate question .. what is causing increases in lipid laden macrophages in Riley’s lungs? If we are able to rule out aspirating and reflux .. where does that leave us? Don’t have those answers right now. What we do know is Riley is able to control thickened liquids and therfore is able to drink if it’s thickened. So right now we have a happy 14 year old who is drinking some super thick Sprite!
Monday Riley has a orthodontists appointment and next Monday Riley leaves for heart camp. Riley LOVES going to heart camp, but to be able to drink their lemonade Riley says makes it even better!