We spoke to Dr Rome and Caelen is fine. He was able to gain valuable information as far as pressures go, which were actually low (good), but there wasn't anything to fix. It's kind of complicated, but we already know that Caelen's pulmonary arteries have occlusions and blockages, preventing adequate and direct blood flow to the lungs. This also being the reason that Dr Rome can't get into the PA's to get pressures and find out exactly how much (or little) blood flow is going to the lungs. So instead, Caelen has a lot of little collateral arteries delivering oxygenated blood to his lungs. The collaterals shoot off his pulmonary arteries and go to the lungs, and they are small. This is how the body rewires and fixes itself.
Dr Rome felt that Caelen's lungs were fine (innocent bystanders) he called them, and in his unofficial opinion, a heart and lung transplant isn't required. That being said, he isn't sure that a heart transplant will fix the plastic bronchitis either. Caelen's heart is fine for now, it's all the "plumbing" around it that is causing problems: blocked and occluded arteries and veins. The plumbing is the real problem because there isn't really a fix for that.
As for the plastic bronchitis, there isn't anything to intervene on. Dr Rome feels like the lymphatic system is just messed up, and it's leaking into the airway.
So we still have to wait for the transplant team to officially meet and discuss Caelen's case in detail.
For now we will just wait and see what the team thinks the next step in his ongoing treatment will be.
Thank you for all of your prayers, please keep them up for Caelen. He looks good and is resting comfortably in recovery.
Love,
Katye
What a little angel. Hang in there, Mom & Dad, he is so lucky to have you as parents. Prayers for you all. Love, Mary
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