A Lil' Boy's Journey to Live….

Archive for October, 2020

CT Results .. 💚

Update .. Dr Goldfarb called with Riley’s CT results. Wonderful news .. there was Improvement from previous scans!! The BO (Bronchiolitis Obliterans .. chronic rejection) has actually gotten better! We didn’t realize that was possible but it’s because Riley’s not drinking and therefore not aspirating. Of course not drinking is not ideal and Riley reminds us pretty much everyday how unfair it is but he too is Happy to hear that it has lead to improvement in his lungs.
We will take Good news Any day!!!

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

Riley’s Nephrology appt @childrensPhila 💚

Update .. Riley had an appt with nephrology on Monday. Honestly still don’t know to much when it comes to the multiple cysts on Riley’s kidneys. The appt ended up being with Dr Furth who is the chief of nephrology.
In the immediate nothing will be done regarding the cysts but Dr Furth is going to look into some things. Starting with reaching out to genetics regarding Riley’s previous genetic testing and to see if he needs more. Genetics will help in diagnosing if Riley has polycystic kidney disease. She is also going to reach out to radiology in regards to previous full body scans Riley has had done. This is in an attempt to see if they truly just appeared or were present in previous scans but not noted. Hopefully that’s not the case because we would take issue if something was present on a scan .. even if that wasn’t what they were scanning for .. and wasn’t noted.
Dr Furth doesn’t believe Riley’s GI issues are related to the cysts and inquired to when Riley’s last scope was. Also suggested that Riley’s GI issues could possibly be related to PTLD but recognized that he doesn’t appear to be showing any other symptoms connected to PTLD.
So as you can see we didn’t really learn to much. Riley will follow up with nephrology in 6 months at which time he’ll have a repeat ultrasound to check the cysts. Dr Furth is also adding some labs to be drawn at Riley’s next transplant appt. She is also going to get back to us after she speaks to genetics and radiology.
November 4th Riley will see Dr Ryan (GI) and we’ll discuss all the GI stuff and the possibility of another scope. Everyone agrees they would like to tie the scope into another procedure. As of now that wouldn’t be till Riley’s annual cath and bronch in March. So we’re monitoring Riley’s GI issues and have made some changes with meds and feeds. Assuming things don’t improve by Riley’s November appt we may be doing the scope sooner. Fingers crossed we can resolve his GI issues and another scope can wait till the spring.
Will update when/if we learn anything more.

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

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