A Lil' Boy's Journey to Live….

Riley’s appt with GI went well. Dr Ryan would like Riley to have an endoscopy when he is having his Bronch and Cath in March. As long as Dr Rome (Cath Attending) isn’t concerned we will move forward with that plan. Dr Ryan is also reaching out to a new Attending in ENT, Dr Ruiz, who is specializing in swallowing. Hoping that a fresh set of eyes may have some ideas in regards to Riley’s aspirating. We are open to any ideas being that Riley still can’t drink.
Will update when we know more regarding the scope and Dr Ruiz. ❤

Update on Bone Infusion ..

The most Precious gift Riley has Ever received. The #GiftofLife. For Riley that included both Heart and Lungs. Riley’s Angel Heart has Always had Beautiful function. Monday’s ECHO showed that still to be True.
We are Forever #Grateful.
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️

Riley received a visit from his Buddy Max. He had a Special Christmas gift for Riley .. a video chat with Sammy Guevara from AEW on TNT. Such a Great thing for both of these guys to do. Sammy facetimed with Riley for almost a hour!
Thank you Both for being so Wonderful to our Riley!! 🤗

Riley had an appointment Tuesday with Dr Mancilla in Endocrine (bone health). Riley is currently scheduled for a Dexa scan mid January and his Zometa infusion towards the end of the month. Apparently Riley’s last scan showed great improvement in his bone density. So much so that instead of another infusion in 6 months we may wait a year. Of course we’ll see how the scan in January looks. It’s also possible we may do another infusion in 6 months but half the dose. We shall see. Before we left Dr Mancilla ordered a repeat xray of Riley’s thoracic spine to check his previous fractures and to be sure that there isn’t any new ones. In all it was a good appt.
As far as Covid .. Riley is doing Amazingly Well! He hasn’t needed a breathing treatment in a few days. He never complained of body aches like Dad and Christian and his fever always remained low after leaving CHOP. Oddly because Riley is immune suppressed and because he got some assistance at CHOP .. he seemed to do better then most who are symptomatic. As everyone should know though you can get COVID again. So we are right back to living with precautions as we have been doing since the beginning of March.

Hopefully 2021 will be a Better year for All!!

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


Update .. Riley is doing pretty good! He thankfully hasn’t had a fever in a couple days. Spoke to lung transplant and we will discontinue the higher dose steroids and go back to maintenance dose and instead of doing the breathing treatment a couple times a day .. it will be as needed.
Riley’s brother Christian is also doing better. Still has loss of smell and taste but we’ve been told that could actually last for a while but isn’t considered a symptom when it comes to returning to the world.
Dad is doing better then last week. Still has some body aches and today lost his sense of taste and smell but everyone’s fever is gone!
Thankfully this SEEMS to be the extent of Covid in the O’Brien household. Assuming nothing changes we have been pretty lucky! Yes we are quarantined. Yes we are out of work. Yes Riley needed some support from CHOP but people are needing long term hospitalization. Ventilator. People are dying. Please wear your mask and wear it right. We will all get through this virus but we need to do it together. Love Your Neighbor.
Thank you all for being on Riley’s Journey with us. ❤

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

Riley’s lung transplant appointment went well!! Labs .. PFTs .. weight etc all look good.
Today was Riley’s last appt with Dr Goldfarb as he soon will be returning to Minnesota. Dr Goldfarb is an Amazing doctor who has been on this Journey with us for 11 years. Since he first walked in Riley’s with Dr Hanna to discuss it being time to list Riley for Heart/Lung transplant. He will be missed at Children’s Hospital of Philadelphia by All who’s lives he touched. 💚

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. ❤♻️💜

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. ❤♻️💜

Riley’s heart transplant appt went well. For over 7 years Riley’s Angel heart has been Beautiful! Today was no different. EKG, Echo and labs all looked Good!
In a few weeks we’ll return to see Urology and soon after that Nephrology and then back to bone health to plan for the next round of bone infusion therapy. Until then ..
Thank You All for being on this Journey with Riley.

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

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