A Lil' Boy's Journey to Live….

Update from Monday’s Heart Transplant Visit ..
Sorry for the delay. Labs .. EKG .. Echo all show Riley’s heart looking and functioning beautifully!
Riley’s weight was still 54 lbs. That’s down 11 lbs from about a year ago. Although everyone agrees that Riley needs to gain some weight versus losing it .. Heart transplant thinks its ok if Riley stays in the 10th percentile. He was always a small child. That is until we beefed him up after transplant. He could just be settling out. So we’ll double up on the high calorie drinks everyday and continue overnight gtube feeds twice a week and see if we can get his weight up some. Just needs to stop losing. Mind you he is still working on eating orally and getting his caloric intake by mouth and in the big picture he is doing Great at it!
Riley’s next appt should be pretesting for his 5 YEAR bronchoscopy and heart cath in March!! 5 YEARS!!! Such an Amazing Blessing to even be able to say that! Riley has come so unbelievably far not just in 5 years but in April it will be 10 years that he started this fight to live! He has won every battle to date but really since his #GiftofLife is when he began to actually live! Go to school .. have friends .. eat .. sleep in his own room .. not be in the hospital every other month etc. We are forever Grateful!!!
Thanks for being on this Journey with us. ❤

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Update .. Riley had an appt Monday with a fluency specialist at Children’s Hospital of Philadelphia. Reason being what seemed to be a stutter had started about a year ago. We waited a little to see if it would play it self out but it didn’t. That being said we learned that Riley doesn’t actually have a stutter but an issue with fluency. Disfluency. So we have been given a exercise to do at home everyday over the next 5 weeks. After the 5 weeks we’ll review Riley’s progress and go from there. 

While at CHOP we picked up a case of high calorie drinks from lung transplant. Since we were there we had Riley jump on the scale. He is now down to 54lbs from 57 the week of Thanksgiving. Not sure why he is still losing weight. Being that we were with the social worker picking up drinks and not there for an actual appt we didn’t talk to anyone about his weight. Debby (SW) is going to pass it along to Allison (nutritionist) and Dr Goldfarb. Thankfully in 2 weeks Riley has an appt with heart transplant and it surely will be a topic of conversation at that time. 

For now we will work on Riley’s fluency and get him drinking some high calorie drinks. Which are meant to eventually replace his overnight feeds. Fingers crossed .. ❤

Riley’s appointment with lung transplant .. Dr Goldfarb went well. Even though he has a little cough his lungs sound ok. Labs all seem to be in Riley’s range.

The only hiccup was that Riley has lost about 8 lbs over the last 6 months or so. May not seem like much but when you were only 65 lbs to begin with its a pretty big drop. We know why. Riley has been trying to transition to oral feeding versus g tube feeds. He was down to only 2 night feeds a week running at half strength. Hope being after this appt he could have cut back more. Unfortunately that will not be the case. Riley will continue with 2 feeds a week with a higher strength. Needless to say Riley is not happy but understands why. We did speak to nutrition and she gave us a bunch of samples for Riley to try that are high calorie drinks. Hopes being that if he can find one he likes he could possible drink his extra calories versus having them go through the feeding tube. He is excited to try but is a very picky eater and drinker. Fingers crossed he finds one he likes! 

Until next time …

Happy Thanksgiving .. ❤

Check out Riley’s Story on Children’s Hospital of Philadelphia’s website .. 💚

http://www.chop.edu/stories/heart-and-lung-transplant-riley-s-story


​Riley and Sandy .. (Speech Therapist from the feeding clinic who taught Riley how to eat) ..  Learning some tricks to help clear his mouth while eating. Riley’s only real struggle he has left when it comes to eating orally.  .. ❤

~ of course a #Wrestler had to come along to watch .. 😉

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 ..

Riley has Successfully made it through his first year ‘in’ school with only 2 hospital sick stays! He is so Proud to call himself a 3rd Grader!!! Thank you to Riley’s teachers .. aides .. therapists and his ‘School Mom’ (you know who you are) who helped Riley transition from home to school and have been so Wonderful to him and our family throughout the year!!

Love You All .. ❤
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. 😎

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