A Lil' Boy's Journey to Live….

Swallow study.

Update. Riley’s swallow study actually looked similar to the one he had a few years ago when he was cleared to drink, but without really using any techniques. He used a small straw, a regular size straw and no straw all with similar results. Chicken nugget seemed to go down without issue. The speech therapist was actually quite pleased with what she saw given Riley’s history.
We are not making any changes to Riley’s intake though until after we talk to his team and further investigate the cause of the ‘fatty cells’ in the lungs.
Given that Riley’s heart has looked beautiful for 9 years we have decided to start seeing both transplant teams on the same day (every 3 months) instead of one every 6 weeks. So June 6th he’ll see his transplant teams and then June 15th he’ll see Dr Ryan (GI) and Dr Ruiz (ENT). They may want to repeat an impedance probe. We shall see.
Until then .. Happy Memorial Day Weekend. πŸ‡ΊπŸ‡Έ

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

Results are in ..

The good news is the lung tissue that was biopsied was Negative for acute cellular rejection. Yay!
We know from the CT scans that there is some chronic rejection, but that is to be expected at this point post transplant.
The not so great news is the lavage showed increased (25%) lipid laden macrophages. This would most likely be a result of aspirating. Riley does not drink like the rest of us, for this reason, however for quality of life reasons he does take ‘sips’ on occasion. This may be the cause of the increased lipid laden macrophages. That being said Riley still struggles with eating. He pockets food in his cheek, and can sometimes take 45 minutes to clear his mouth. So it’s also possible that he’s aspirating some of the food. Another possible cause could be reflux. Most of Riley’s diet is through his gtube. Riley did have a Thal fundoplication after transplant to try and prevent refluxing, but a Thal is a partial fundoplication unlike the Nissen. Dr Nance was unable to do a Nissen because of Riley’s heterotaxy. So that would leave some room for reflux. Right now we just can’t be sure.
The other thing that was discovered from the bronch is low grade lymphocytic bronchiolitis. They aren’t overly concerned. It is believed to be caused either by the recent pneumonia or aspirating.
The plan is to head back to GI and see Dr Ryan and to also see Dr Ruiz in ENT. Dr Ruiz is newer to CHOP and specializes in swallowing. Riley will also have another swallow study done to see if he’s aspirating and does he also aspirate some food when he eats.
Everything in Riley’s world is a balancing act. Trying to do everything to give him the longest life possible .. while trying to give him quality of life now.
Happy Friday to you ALL and as Always
Thank you for being on this Journey with Riley and our family!

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

Update .. πŸ’™

Update from Dr Drant ..

~ Good news! The measurements of Riley’s aorta from his recent cath are stable and show that his aorta is not dilating out of proportion to his body growth. The measurements of the ascending aorta (between the donor aorta and his aortic arch) fall into the upper limit of normal-mildly dilated range.

Still waiting for results from pulmonary. Emailed Dr Josephson who actually is in Boston at a Heart/Lung Transplant Conference. She is reaching out to the team back at Children’s Hospital of Philadelphia. Hopefully we’ll have results soon.


Heart Results.

CTA update

Update ❀️


9 years ago .. about this time on March 4th 2013 .. We prepared to put Riley’s life literally in the hands of God and Dr Spray. I’ll never forget the walk to the OR. We walked past all the pods and through the CICU. It seemed as though everything had stopped. The reality was almost everything had. Everyone in the CICU stopped and watched as we ALL passed. Riley has spent his life frequenting the CICU and Everyone knew he was headed for his Heart/Lung Transplant. After waiting almost three and a half years Riley was about to receive his #GiftofLife .. β€β™»οΈπŸ’œ
* Riley’s transplant surgery took place in the early morning of March 5th.


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