A Lil' Boy's Journey to Live….

Riley’s transplant appointments on Monday went well.
The only real concern is for Riley’s weight. He lost 3 pounds since October. Riley does eat orally but just not enough. It still doesn’t come naturally, and Riley is a pretty picky eater. So the decision was made to add a gtube feed to his school day. He already goes to the nurse for water so we will add a Peptamen.
Riley’s next appt is with orthopedics next week to see how his arm is healing. Hopefully they’ll be able to remove the cast!
Till then .. Happy Thanksgiving!! πŸ§‘πŸ’›πŸ§‘πŸ’›

(Pic is of Riley and one of his favorite phlebotomists Mitch.)

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

Just received a call from Dr Mancilla (endocrine). After about 2 years she believes it’s time for Riley to have another round of Zometa (bone infusion therapy). It will be outpatient since Riley didn’t have any adverse reactions previously. The hope is to do the infusion in January. We just have to wait till his current arm fracture is healed.
Riley’s upcoming appointments are with the heart and lung transplant teams the week of Thanksgiving.

Till then .. Go #Phillies ⚾️⚾️⚾️⚾️

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

8th Grade Class Picture

8th Grade (can you believe it?) Class Picture.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

Riley was Very Happy today when Orthopedics changed his cast, and stopped it below the elbow! This cast he will have until November 29th. At that time they will repeat a xray and decide if it should be recasted or put in a splint.
Riley picked MFPW green again, but this time since it’s smaller he’s saving it just for his @4monsterfactory buddies to sign. πŸ’š

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

(Riley broke his wrist .. then spiked a fever.)

Riley has been admitted to 8S. They have already started IV antibiotics, and gave a stress dose of steroids. Of course they have also drawn labs .. thankfully off the IV. Before heading to the floor Riley also had his arm casted. He picked Monster Factory Green! We will follow up with orthopedics next week. Hopefully this is a short uneventful stay.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior still #BeatingtheOdds Everyday. β€οΈβ™»οΈο’œ

Quick Update. 🧑

Riley isn’t feeling well. We were hoping yesterday that it was allergies, but today he woke up with a fever. We did a Covid test at home and thankfully it was negative, but there are dozens of other viruses it could be.
We spoke to lung transplant. His fever has not reached the adrenal insufficiency threshold so we are treating with tylenol and breathing treatments at home. If his fever should go up we will head over to CHOP. Hopefully it stays low and we will head to CHOP tomorrow for labs and a respiratory panel.
Positive thoughts appreciated. Praying it’s just a simple virus that we can continue to treat at home.


Riley’s endocrine appt went well. We will draw some extra labs during his next transplant appts (November), and do a bone density scan around the same time. Riley did do a xray today before we left to check bone age.
We did briefly discuss growth hormones, but Riley seems to be where he needs to be for his age minus stature. Future labs will better determine that. Transplant is who originally mentioned the growth hormones, and Dr Mancilla agreed that a lot of transplant patients receive them because of long term steroid use, however, she isn’t aware of any with Loeys-Dietz (connective tissue disorder). She has concerns for any vascular issues they could cause. She is going to talk with Dr Drant (LDS doc). We explained that we’re not interested in doing anything that would put Riley at risk. Not for his stature. So we’ll see what the future holds.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

Riley’s transplant appointments went well. Labs, echo and EKG looked good. Dr Lin does want to talk to Dr Drant about Riley’s aortic arch and management of the aorta, but says it’s nothing she’s concerned about. There is room to increase the losartan however Riley’s blood pressure was pretty low so that isn’t really an option at this time. We’ll see what their conversation brings.
Over in lung transplant .. Pulmonary function tests looked about the same. There is some decrease to lung function but nothing acute. Pretty much it’s expected this far out from transplant.
Riley is due for his 3rd Covid booster. They would prefer he gets it soon with school starting rather than waiting till the new boosters come out. So we will do that, and then get the new booster along with the flu vaccine in the fall.
Also we have decided to wait to scope Riley. So rather than doing it in October we’ll do it in the spring with his yearly bronch and cath. Unless something prompts it to be done sooner.
Riley’s upcoming appointments are with dermatology, orthodontists and endocrine.

September Riley starts 8th grade! Such a huge milestone for a kid, as we were reminded today, that is so medically complex.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior still #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

14 Year Well Visit.

Riley may not be an Average 14 year old but his Quite an Extraordinary one.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. β€οΈβ™»οΈπŸ’œ

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