A Lil' Boy's Journey to Live….

Archive for June, 2022

Visit with GI and ENT @childrensPhila ❤️

Update to today’s appointments with Dr Ryan (GI) and Dr Ruiz (ENT).
Dr Ryan shared an interesting study done in Boston that shows that lipid laden macrophages can be present in the lungs with or without reflux or aspiration. We have forwarded that information to Dr Josephson (lung transplant). Of course we know in years past that when we completely held fluids the lipid laden macrophages decreased in Riley’s lungs but more recent studies have shown that Riley wasn’t aspirating yet there was an increase in lipid laden macrophages. So the question is are Riley’s truly caused by aspirating or reflux or caused by something else all together? That’s what we are going to try and figure out.
When we met with Dr Ruiz he suggested doing FEES studies. It is similar to a laryngoscopy where they insert a small camera through the nose however with FEES Riley would drink liquids dyed green and they would watch through the camera what happens when he swallows. Where exactly does the fluid go. It was suggested to do it several times to get a better overall picture versus a single snapshot in time.
Now that Riley is 14 we can’t really be the ones to say yes .. he has to want to do it. In the office he wasn’t sure. Dr Ruiz did explain though that this could be the answer. Doing the FEES study could show if aspirating is really the problem and if it’s not it could open the door to being able to drink again. Of course once we got to the car Riley agreed to do it. So we’ll call tomorrow to schedule.
There was also talk about doing an endoscopy and placing an impedance probe, but we are going to do the FEES study first and go from there.
Fingers crossed that we are on the road to finding some answers.

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

End of the school year!

Today was Riley’s last day of 7th grade!!

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

Update to Riley’s appts Monday @childrensPhila ❤️

Riley’s appointments on Monday went well!
Labs, echo and EKG all looked Good. We met Dr Berger, while seeing Dr Rossano, who is joining the heart transplant team. Dr Berger will be a Great addition to the team. Very thorough.
Riley’s PFT’s (pulmonary function tests) were comparable to his last. Which is good. We discussed the results from the swallow study. Riley was quick to tell Dr Josephson that the study didn’t show aspirating, but the reality is during the last study it didn’t really either and a month later his lavage showed lipid laden macrophages. This time we aren’t repeating a bronchosopy so we really need to find the source before giving the go ahead to drink. Hopefully when we see Dr Ryan and Dr Ruiz next week we’ll come up with a plan.
Last appointment was with Dr Anari in orthopedics. Another amazing doctor we’ve added to Riley’s team. He too was very thorough. We spoke of Riley’s cardiac history and his newer diagnosis of Loeys-Dietz. He said it made sense because Riley presents more like someone with LDS than with cardiac history. There was a slight increase to Riley’s curve (scoliosis). He now measures at 21. Intervention occurs if the curve measures over 25. So we will keep an eye and see orthopedics again in 6 months and repeat an xray at that time.
Again overall the appointments went well. Riley will see both transplant teams again in 3 months and orthopedics in 6.
In the mean time Riley has about a week left of 7th grade!! Craziness! In the beginning of the summer Riley will go to Liberty Lake Day Camp for 2 weeks and the last week of July he has been invited back to heart camp with Children’s Hospital of Philadelphia! Riley is Super Excited for both!!

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

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