A Lil' Boy's Journey to Live….

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. โคโ™ป๏ธ๐Ÿ’œ

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 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. ๐Ÿ’•

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. โคโ™ป๏ธ๐Ÿ’™

Riley was admitted Monday after his sedated MRI. There was some struggles with getting his IV. Please see Riley’s Instagram or FB page for complete update at Smile4Riley.


In the big picture Tuesday was a pretty good day for Riley.
Riley was again given some options in regards to getting a blood drawing IV. He chose to get labs once daily and finger sticks every 6 hours rather then getting another IV placed. Of course when they came to draw the labs we had to remind him this is what chose. Riley does amazing with labs outpatient but while inpatient he’s struggling. Needless to say they got the labs.
Hoping to see Dr Goldfarb Wednesday but spoke via email. Riley does not have chiari malformation! In any other situation that would be a Yay but in Riley case it was our last hope to finding a cause for the aspirating. Riley doesn’t know the MRI results yet. We will have to break the news to him Wednesday but just want to talk to Dr Goldfarb in person first. Not that anything would have changed. In the end it comes back to Quality of Life and what we as Riley’s parents and what Riley wants to do. There are a lot of things in Riley’s life that make him happy and to this point we (including Riley) aren’t willing to give that all up for the one pleasure of drinking.
On a happier note .. Riley hung out at the #RyanSeacrestFoundation studio for a little while in the afternoon. Of course he was checking out all the #WWE superstars that have left autographs and even a belt on the wall. He was soooo Happy to see his Buddy/bunk mate/child life specialist Eric from heart camp while at Ryan Seacrest’s studio!!! To top it off we played some bingo and Riley won three times!!
Fingers crossed that Wednesday is a good day. He will be going into 48 hours since the infusion so if side effects are going to be an issue this would be the time they would usually start appearing! Hopefully if there’s any side effects it will just be in his calcium levels which are being monitored closely and can be adjusted.

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


* Pic is drawings done by Dr Jackson while we were discussing Riley’s VPI along with his speech and swallowing issues. *

~ Update to Riley’s appts Monday.
Both went well! With a better understand of Riley’s VPI we now see how that wouldn’t be causing Riley’s aspirating. It is definitely a factor in his speech though. They would really like Riley to get more one on one speech therapy to work on articulation. Hopefully that is possible at school.
Once in Orthopedics Riley had his xray and we visited with Dr Deeney. Riley’s scoliosis looks unchanged and between the xray and the recent CT scan there were no new fractures noted! Yay!
Riley will see the speech therapist in plastic surgery again in a year and we will follow up with Orthopedics in 6 months.
Wednesday Riley has an appt with Endocrine. There we will sign consent for Riley’s admission October 14th for his next round of Zometa (bone infusion therapy).


Riley’s Tuesday with Lung Transplant went pretty good!
PFT’s (pulmonary function tests) looked about the same as last time.
Riley is weighing in just shy of 70lbs. So he has finally gained back the 15lbs he lost and added a few more. Of course this is because of his added nutritional boluses he gets everyday via his gtube. They would like to get Riley to the 25th percentile so he has about 7 more pounds to gain before we visit pulling back on any boluses. At that time he’ll need to be able to maintain and gain weight which Riley seems to struggle with just eating orally. We’ll cross that bridge when we get ‘back’ there.
We discussed more about the possibility of Riley having Chiari malformation. As mentioned previously the plan is to do a MRI when Riley’s inpatient in October for his bone infusion therapy. We talked a little more about Riley getting headaches. Before transplant Riley saw Dr Licht in neurology so Dr Goldfarb is going to loop him in with the MRI.
Still waiting on some lab results but what was back when we left looked good.
Riley did get his flu shot today and it played out much like when he gets an IV .. Riley freaking out! It’s crazy because just a few hours earlier he had about 10 vials of blood drawn and sat by himself with a little help from Buzzy and had no issues. As upset as he was he understood he HAD TO get the flu shot. He knows how Important it is to Protect his Precious #GiftofLife.
Monday Riley has appts with Plastic Surgery and Orthopedics. Followed by an appt Wednesday with Endocrine (bone health).
Thank you All for being on this Journey with Riley.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ๐Ÿ’œโ™ป๏ธโค

Update .. Heard from Dr Ryan (GI) and spoke to Dr Piccoli (GI) and Dr Goldfarb this week. GI docs are in agreement that Riley’s impedance probe and biopsy results looked pretty good. There was some minor inflammation in the esophagus and the probe showed some reflux. It was pretty minimal time over the 24 hour period. So the Thal is doing it’s job. We are going to add back a reflux med in the continuing effort to protect Riley’s lungs.
Dr Goldfarb said Riley’s BAL (lavage done during Bronchoscopy) was improved some since March. This is most likely because Riley isn’t drinking and therefore isn’t aspirating as much. There is still some cellular evidence of aspirating/refluxing but hopefully adding the reflux med and with Riley still not drinking that will continue to improve.
Riley has several appts coming up in September including plastic surgery, bone health, orthopedics and pulmonary. In October Riley will be admitted to CHOP for his next round of Zometa (bone infusion therapy). During that admission Riley will have the MRI to check for Chiari malformation.
Until then .. Riley is excited to be back in school and in the 5th grade!!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. โคโ™ป๏ธ๐Ÿ’™

Update .. ๐Ÿ’š

Update .. We are still waiting on the final results from Riley’s procedures last week. After some more research and talks with the team we are going to go ahead with the MRI to rule out Riley having Chiari malformation. This will be done during Riley’s admission in October for his bone infusion therapy. Riley does have several of the many possible characteristics listed under chiari malformation. Could also possibly explain Riley’s frequent headaches located at the bottom back of his head. We don’t know but MRI is the only way to find out. If Riley’s doesn’t have chiari malformation then it will be another thing we will check off the list. It’s horrible to have to continue to expose Riley to all this radiation but HE wants answers as much as everyone else. So we will continue to do whatever we need to do to give Riley the Best quality of life NOW!!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. โคโ™ป๏ธ๐Ÿ’™

~ EDIT .. have learned since posting this that MRI’s don’t use radiation! Thank Goodness! Riley has been exposed to a lot of radiation already in his 11 years.

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