A Lil' Boy's Journey to Live….

Archive for the ‘Uncategorized’ Category

8th grade dance

Riley looking Handsome as ever headed to his 8th grade dance.

Heart Biopsy Results

Cardiac Cath and Bronchosopy @childrensphila ❤️

Riley has been Discharged! Visually everything looked Good. Hopefully Tuesday we’ll have the biopsy and primarily lavage results.
The scope and impedance probe were postponed.

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


CT and CTA results

Riley’s CT and CTA looked ‘ok’. The CT showed some air trapping which has been present for years. It is related to the Bronchiolitis obliteran (chronic rejection). There was also a few tree in bud opacities that may be related to recent illness and mucus. It will be further evaluated when Riley has his bronchosopy and lavage.
The CTA showed dilation of the aorta beyond the donor site. Dilation has been previously noted. Doesn’t look to have changed much since last year but has gone from 2.9cm in 2018 to 3.2cm in 2023. We will continue to monitor. Riley’s right atrium was also noted to be dilated, but we’re waiting to hear back from the team in regards to that.
We have added an xray of Riley’s neck/spine to his pretesting to check the blood vessels in the back of Riley’s head/neck. Also GI will be placing the impedance probe when Riley is scoped March 6th. He will be admitted for 24 hours.

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

Update to Riley’s Upcoming Procedures @ChildrensPhila ❤️

Feeling Better .. 💙

Riley has been over 24 hours without a fever!! We are cautiously optimistic that the worst is over. Riley also says he feels better. It’s really the fever that just knocks him out. When it all started on Friday that’s how we immediately knew he had a fever before even checking. Riley only has xbox privileges on the weekends. Friday evening he wasn’t playing xbox, but rather laying on the couch. Not even touching his phone. Sure enough he had a fever. Once the fever broke he wanted to use his phone again. Lol.
If anything should change we will surely update, but for now Riley is fever free and feeling a lot better!!

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


Update .. 💚

Update .. last night was rough. Riley’s fever came back, and went all the way up to 104.4. We were in contact with CHOP, and it was agreed if we could get it below 102.5 to ride it out at home. So we gave him extra prednisone along with Tylenol and the fever went down to 101.5. Again today Riley doesn’t have a fever, but is dealing with the respiratory side of metapneumovirus. That being said we have increased his stress dose steroids from 7.5 mg twice a day to 30 mg. Prednisone really does seem to help with the fever so we are hopeful that tonight will be better. Hopefully last night was the peak of the virus.

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

Riley’s Feeling Better.

Update .. ❤️

Update .. ❤️

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