A Lil' Boy's Journey to Live….

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. ❤♻️💜

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. ❤♻️💜

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