A Lil' Boy's Journey to Live….

Update .. overall Riley’s urology appt went well. We did learn from the ultrasound though that Riley has cysts on his kidneys. The concern being there a several on both kidneys. As long as it’s not polycystic kidney disease .. it shouldn’t be too much to worry about. Next stop is nephrology. Well update when we know more.

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

Update .. Riley’s appts with GI and Urology went well.
For GI they have added a PRN of Zofran for when Riley feels nausea. Mainly because he’ll throw up to make himself feel better and that could damage/ undo his Thal. Also increased his acid refux med. GI is talking with the nutritionist in lung transplant in regards to trying some different things in the gtube versus the feed he’s been getting for most of his life. There is also talk of doing another scope but the hope would be to loop that into something else he’d need anesthesia for. Right now, thankfully, Riley doesn’t have any procedures scheduled so we’re going to hold off for a little while. We will follow up with GI in November.
As far as urology it may fall under the little more private category since Riley is now 12.  I will say that it shouldn’t be anything of great concern. Riley will have an pelvic/abdominal ultrasound on Monday in urology before his appt with plastic surgery. Tuesday we will have a follow up appt with urology to review the ultrasound and a couple another things that are being done between now and then.
Hopefully the issues we went to see both specialities for can be resolved as we try to give Riley a normal as a life as possible .. even in these Crazy Covid19 times.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. 

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.

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. ❤♻️💜

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. ❤

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 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.

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