Riley had a pretty uneventful visit with Heart Transplant on Monday.
Blood work .. EKG and Echo all looked Good! Weight is still only 54 lbs but we’ve decided not to make any changes right now as far as nutrition. That may change in 6 weeks when Riley sees Lung Transplant though. For now we know he hangs out below the 5% percentile and that’s where he always was before transplant. He was so beefed up after transplant that we’re still trying to gauge where he is going to fall long term. As long as Riley doesn’t fall off the chart he should be ok.
Riley’s next scheduled appts aren’t for at least 6 weeks. So we are heading into summer on a high note. Riley is finishing up 3rd grade. Excited for family vacation in a few weeks and going to camp in August!
Words could Never express the our Gratitude to Riley’s donor and their family for making it ALL possible. ❤
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday.
Riley turned 10 April 4th!!
10 years ago at this time I was trying to sleep knowing in a few short hours I would be headed over the bridge to give birth to a child that at the time was safe inside of me but would fight for his life once he was born.
Thankfully Riley was able to wait till he was four days old for his first open heart surgery but then 3 months later he was headed back in for another OHS. Soon Children’s Hospital of Philadelphia became our second home.
By the time Riley was one and a half he was listed for a heart and bilateral lung transplant! During the almost three and a half year wait Riley was on 5 liters of oxygen and having cardiac caths done every 6 to 8 weeks. He struggled with eating and walking and talking and just breathing but he was always a fighter! Every battle he faced he came out winning!
Now he is turning 10!! It’s the most Amazing thing Ever to be able to say that .. Riley is turning 10!!! I remember when Riley turned 3 and how Amazing that time was! He has beaten every statistic thrown his way and continues to do so every day!
I couldn’t be Prouder to call such a Warrior my son!
Happy Birthday to my Miracle!
#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday .. #GiftofLife
Update .. Sorry for not updating Mom’s blog sooner.
Riley was admitted to CHOP last Sunday running a high fever. Turned out he had the Flu. He was inpatient for 5 days.
Since being home he developed a slight cough but other then that has been doing Great!
Also .. Riley results from his biopsies came back. ZERO Rejection!!
Finally .. In 2 weeks Riley will be 10 years old!! Yes! 10! Never imagined saying Riley’s going to be 10 yet here we are Thanks to Riley’s donor and their family! Forever Grateful … 💜💚
March 5th Riley celebrated his 5 year transplant anniversary! Thank you to his donor for making the last 5 years possible.
Monday Riley had his annual Cath and Bronch. Everything looked good according to Dr Rome and Dr Goldfarb. We will have biopsy/pathology results back in the next few days. Fingers crossed and positive thoughts for zero rejection or infections. ❤
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. ❤
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 .. ❤