A Lil' Boy's Journey to Live….

Archive for the ‘Uncategorized’ Category

Watch “Riley’s 12th Birthday Surprise Parade!!” on YouTube

April 4th was Riley’s 12th birthday!! Mom organized a Surprise Birthday Parade! So Wonderful to see the community, family and friends come together (from a distance) to show Riley how much he is loved on his birthday and Everyday!

🥳🚓🚒🚑🚗🚙🏍🚑🚒🚓🥳

Update .. 💚

Riley’s heart has zero rejection.

Riley’s lung results show A1 rejection. This level of rejection will not be treated unless Riley becomes symptomatic.
The lavage findings showed that Riley’s aspirating. Where the numbers from Riley’s bronch in August were lower; Monday’s were higher then they were last March when we first thought there may be aspiration. Given that we exhausted every possibility over the last year to find a cause for the aspirating it ultimately comes down to technique. Yes Riley’s swallow study a few weeks back looked good but with every sip he was extremely close to aspirating. Obviously once we came home his technique wasn’t as good and he was/is aspirating. This means Riley will need to go back to strictly gtube hydration.
We have not broke this news to Riley yet. He is going to be devastated! We will continue to try and overcome this but it may be a matter of Riley maturing and completely grasping the importance of technique.
Please keep Riley in your thoughts as we prepare to share this news with him.

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

Covid19 Preca

Not Worth the Risk.

Swallow Study @ChildrensPhila .. ❤

Riley had his swallow study today. HE CAN DRINK AGAIN!!!! As you can imagine tears of Happiness were shed! Of course it’s not a free for all. Riley needs to use VERY small straws. Like the ones found on drink boxes. It’s ok though .. he can drink and he can drink whatever he wants not just water! Drinking for now will be for pure enjoyment. He will continue to get fluid/nutrition through his gtube. One thing at a time. We’ve already stopped to buy orange juice for the morning and drink boxes for lunch. Since April Riley hasn’t been able to drink and went through a triple scope, laryngoscopy and a MRI only to not find any answers. It pretty much comes down to smaller amounts being drank plus a little technique.

In the end .. Today is a day to Celebrate!!!

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

Visit with Heart Transplant @ChildrensPhila ❤

Riley’s visit with heart transplant went well.
Labs, echo and EKG all look good. Next visit he will get a 24 hour holter monitor.
Coming up next is Riley’s swallow study Feburary 11th. Following that will be his 7 year post transplant cardiac catheterization and bronchoscopy. Still working on coordinating the different docs but are planning for a procedure date the first week of March. Will update once we have a date. ❤

Appt with lung transplant @ChildrensPhila .. 💚

Riley had his appt Monday with lung transplant.
PFT’s (pulmonary function test) and labs were all within ‘Riley range’.
He seems to have recovered nicely from the astrovirus and CDiff. Just has a few more days of Vancomycin to finish.
He lost a few pounds from being inpatient last week but nothing concerning. We actually made some adjustments to his gtube feeds/hydration. Hopefully these changes will get Riley back to eating orally more. With all the gtube nutrition he just isn’t hungry.
Riley did start taking Tamiflu prophylactically last night because unfortunately his big brother Christian was diagnosed with the flu yesterday. Fingers crossed that Riley does not get the flu or back to CHOP he’d go.
Lastly Riley had a dexa scan. Those results will be sent to his bone health doctor in Endocrine who we’ll see before his next bone infusion therapy in the spring.
Thank you All for continuing to be on this Journey with Riley.

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

Riley is Home .. ❤♻️💜

Ok Day @childrensPhila .. 💚

Riley had another ok day. Still having issues tolerating his feeds but that can be expected when you have a GI bug on top of CDiff. So he’s pretty much not eating orally but is managing to take Pedialyte through the gtube instead of needing IV fluids.
Hopefully Thursday is an ever better day and Riley can go home. Won’t know if that’s happening though till sometime Thursday. Reality is Riley can do the gtube hydration at home but being how medically complex he is everyone wants to be sure he doesn’t need the hospital’s support before we make that move. No one wants to have to go back. Well see what Thursday brings.

~ Dr Mike from heart camp came to visit Riley. He helped to lift Riley’s spirits. Good luck to Dr Mike as he soon will be entering into his cardiology fellowship either at CHOP or another children’s hospital somewhere in the US.

Riley’s @ChildrensPhila .. 💚

Riley is currently at CHOP. He was admitted Sunday through the emergency department. He has since been diagnosed with Astrovirus and CDiff.

Thank you for the continued love and support. 💕

Appt with Heart Transplant @ChildrensPhila ❤

Riley’s appointment with heart transplant went Great! Labs all look Good and Riley’s ‘Angel Heart’ looks Beautiful! Thankfully Riley’s heart has been Amazing since the day it was Gifted to him!
Today’s appt included a visit with Dr Rossano. Always great to see Dr Rossano. He holds a special place in our hearts. Like so many others who have been with us through different times. Dr Rossano was the attending in the CICU Easter Sunday after Riley’s transplant. The day that Riley’s lung collapsed and he had to go back on the ventilator .. for the 3rd and final time. We knew at that point the next step would be Riley getting a Tracheostomy. Needless to say it was a long and difficult night and we are Forever Grateful that Dr Rossano was by our side.

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

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