A Lil' Boy's Journey to Live….

On Monday morning June 10th Riley went in for his Cath/Bronch. The consensus seemed to be that Riley is doing great and these are routine biopsies to be done at 3 months post transplant. Since Riley is doing so great ENT was included in the procedures to check the airway for Decannulation.
About a hour after escorting Riley to the cath lab we received our first update from Dr Javia (ENT). He told us that the anastomosis (connection site from transplant) was healing nicely. Then he said that Riley had a good amount of secretions below the site going into the lungs. Cause of the secretions being unknown at the time but the upper airway was also narrowed. 50% occluded. This also having a currently unknown cause. It could be inflamed because of the secretions below or it could be Subglottic Stenosis (narrowing of the airway most likely caused by tissue). Either cause takes away the ability to Decannulate any time soon. In another month or so Dr Javia will take another look. If it’s inflammation it should get better after starting an anti-inflammatory/antibiotic. If it’s stenosis it won’t improve. It could actually get worse. If the narrowing is still there next time we will discuss cutting balloons or possible reconstructive surgery of Riley’s airway. As one could imagine this was hard news to take. Riley has been able to support himself off the vent/CPap with no problems around the clock making the news almost shocking.
After ENT was finished Dr Goldfarb did the Bronchoscopy. He didn’t want to irritate Riley’s already narrowed airway so he did the bronch through the tracheostomy. He took pieces for biopsy and also collected secretions for testing. He believed that Riley’s lungs looked good and the secretions could possibly be caused by Riley just not being able to cough them up all the way and they hang out right below the trach. This is a little puzzling because Riley has needed less suction yet here sit these secretions. 
Finally Dr Rome did the Cardiac Cath. He also took pieces for biopsy and checked Riley’s filling pressures. The pressures have improved since the last Cath in April.
So now we wait for results which should take a few days. We have received one test result late Monday night though. Riley tested positive for Adenovirus. He had this as a baby and ended up in CHOP for 10 days however we know Riley having Adenovirus post Heart/Lung Transplant could be even more serious. A little boy who had a Heart/Lung Transplant several years ago at CHOP also got Adenovirus soon after Transplant. The virus literally shredded his donor lungs requiring him to have a second Lung Transplant just shortly after having his Heart/Lung Transplant. He did survive the second Transplant but sadly passed away after a year due to rejection.
The Adenovirus is something we just learned about at 11:30 at night. Before the Transplant team is even aware. We actually knew first because the contact restrictions needed to be changed on Riley’s door. Tuesday I’m expecting a plan of care. I made sure that the Transplant teams were made aware on Monday night because I want a plan on Tuesday. The PCU NP was saying how Adenovirus isn’t something they can really treat but rather watch. Sooo that plan will change! I have read of medications being used for Adenovirus post Lung Transplant. Seriously the paraflu wasn’t something they believed they could treat yet they did.
Please continue to keep Riley in your thoughts and prayers. I can’t imagine going backwards now after coming so far .. ♥

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