A Lil' Boy's Journey to Live….

Appts @ChildrensPhila .. ❤

Update ~ Riley’s appointments at Children’s Hospital of Philadelphia went well. 

Plastics is happy with his progress in the speech department. Still some things to work on but Riley has certainly come a long way. They did suggest consulting with a fluency specialist to address a slight stutter. Also Riley will see the feeding clinic once again next month to get some help with some small struggles he still has while eating. 

Next stop was to general surgery (Dr Nance’s office) so they could take a look at Riley’s gtube site. Reason being .. On Friday he had a major leaking issue with his gtube. We changed the button but the irritation began almost immediately. By Saturday it looked pretty bad and CHOP advised us to use Desitin and to obviously call if it got worse. If not to come in the office Monday. So in the office the decision was made to up the size of the button. The tricky part is that Riley has a lot of abdominal scarring. This has caused the gtube area to kinda canal. Making it so the button part is never really flush against the skin. There is more of a space and therefore it tends to leak more. For now they gave us Mepilex to use around the site to help it heal and they changed the button size. 

Ultimately the answer is for Riley to no longer need a gtube. Today he is closer than he has even been. After last week’s appt with Cardiology we have started to wean Riley’s overnight feeds. We had already cut the feeds in half each night but now we will do 4 overnight feeds a week for a month then 2 overnight feeds a week for about another 3 weeks till Riley sees Pulmonary again. At that point we will see how his weight and labs look and decide where to go. Either we will continue with possibly 2 feeds a week or Riley will be able to stop the feeds all together. That is a day we All look forward to but especially Riley who has had a feeding tube since he was 9 months old. Needing it everyday for nutrition and life saving medications. Now at 9 years old he has learned how to eat and to take his meds by mouth. Riley has overcome Everything to date .. Being able to throw his gtube in the trash like he did his Jtube .. his oxygen tubing and his Trach will be a Celebration of yet another battle that Riley has Won! Fingers crossed. 

Thank you all for being on Riley’s Journey with us! Until next time ..

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