A Lil' Boy's Journey to Live….

Update .. ❤

Update .. We are still working out the details of next week’s procedures. We know Riley will have his Bronch and Cath on Friday. Dr Ryan in GI was working with cardiac anesthesia to see if it was possible to also scope Riley while he’s under. With the new findings of Loeys Dietz Riley needs an MRA (Similar to MRI but checking blood vessels). Riley will also need to be sedated for that. Makes sense to try and do it while he’s already under anesthesia rather than sedating him again in the near future. The discussion now is the length he may need to be under to have three different docs come in and do their thing along with the MRA. We have already expressed that if it comes down to time we would rather do the MRA than the scope. So for now our opinions are being shared with the teams. Monday Riley sees a new geneticist, Dr Kallish and a new cardiologist, Dr Drant. Both are joining Riley’s team because of the Loeys Dietz.
Next week will be a busy week for Riley. Monday is CHOP to meet the new docs. Wednesday we head to Philly for a Covid test. Thursday is pretesting (labs, echo, EKG and stress test). Friday is Riley’s 8 year Transplant Anniversary and his procedures day.
Hope Everyone has a Great weekend! Will update again next week.

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

Genetic Testing Results

We have received Riley’s genetic testing back. Everything except in regards to his kidneys which will be about another month or so.
Testing has shown the SAMD2 gene to have ‘differences’. This would be linked to the heterotaxy, structural heart issues, developmental delays.
We also learned that Riley has Loeys Dietz Syndrome. This also links to some issues we know Riley already has. Scoliosis, raised palate, extreme flexibility, ‘doughy’ skin, headaches, caved in chest. It also though causes blood vessels to loop and kink in ways they are not suppose to. This issue with the blood vessels puts people with Loeys Dietz at high risk for aneurysms.
We still have much more to learn about Loeys Dietz Syndrome. Dr Strong in genetics has been Wonderful. She has made herself available to answer any questions we may have and there are lots. She has also already reached out to Dr Lin in heart transplant and everyone is agreement that Riley needs to have blood vessel mapping done. CHOP will be calling Monday to schedule.
So in the end we were able to put a name on some of Riley’s issues but we’ve also opened a whole new can of worms. Aneurysms were never really something on our radar. Now we’ve been warned about severe headaches, which Riley gets, and having to figure out if they warrant a trip to the emergency room. Hopefully as we learn more the fear will subside.
As we venture down this new road we will be sure to update you all who have been on this Journey with us.

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

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. ❤♻️💜

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