A Lil' Boy's Journey to Live….

Archive for September, 2019

Visit with Plastics and Orthopedics @ChildrensPhila ❤

* Pic is drawings done by Dr Jackson while we were discussing Riley’s VPI along with his speech and swallowing issues. *

~ Update to Riley’s appts Monday.
Both went well! With a better understand of Riley’s VPI we now see how that wouldn’t be causing Riley’s aspirating. It is definitely a factor in his speech though. They would really like Riley to get more one on one speech therapy to work on articulation. Hopefully that is possible at school.
Once in Orthopedics Riley had his xray and we visited with Dr Deeney. Riley’s scoliosis looks unchanged and between the xray and the recent CT scan there were no new fractures noted! Yay!
Riley will see the speech therapist in plastic surgery again in a year and we will follow up with Orthopedics in 6 months.
Wednesday Riley has an appt with Endocrine. There we will sign consent for Riley’s admission October 14th for his next round of Zometa (bone infusion therapy).


Visit with Lung Transplant @ChildrensPhila .. 💚

Riley’s Tuesday with Lung Transplant went pretty good!
PFT’s (pulmonary function tests) looked about the same as last time.
Riley is weighing in just shy of 70lbs. So he has finally gained back the 15lbs he lost and added a few more. Of course this is because of his added nutritional boluses he gets everyday via his gtube. They would like to get Riley to the 25th percentile so he has about 7 more pounds to gain before we visit pulling back on any boluses. At that time he’ll need to be able to maintain and gain weight which Riley seems to struggle with just eating orally. We’ll cross that bridge when we get ‘back’ there.
We discussed more about the possibility of Riley having Chiari malformation. As mentioned previously the plan is to do a MRI when Riley’s inpatient in October for his bone infusion therapy. We talked a little more about Riley getting headaches. Before transplant Riley saw Dr Licht in neurology so Dr Goldfarb is going to loop him in with the MRI.
Still waiting on some lab results but what was back when we left looked good.
Riley did get his flu shot today and it played out much like when he gets an IV .. Riley freaking out! It’s crazy because just a few hours earlier he had about 10 vials of blood drawn and sat by himself with a little help from Buzzy and had no issues. As upset as he was he understood he HAD TO get the flu shot. He knows how Important it is to Protect his Precious #GiftofLife.
Monday Riley has appts with Plastic Surgery and Orthopedics. Followed by an appt Wednesday with Endocrine (bone health).
Thank you All for being on this Journey with Riley.

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. 💜♻️❤

Update .. 💙♻️❤

Update .. Heard from Dr Ryan (GI) and spoke to Dr Piccoli (GI) and Dr Goldfarb this week. GI docs are in agreement that Riley’s impedance probe and biopsy results looked pretty good. There was some minor inflammation in the esophagus and the probe showed some reflux. It was pretty minimal time over the 24 hour period. So the Thal is doing it’s job. We are going to add back a reflux med in the continuing effort to protect Riley’s lungs.
Dr Goldfarb said Riley’s BAL (lavage done during Bronchoscopy) was improved some since March. This is most likely because Riley isn’t drinking and therefore isn’t aspirating as much. There is still some cellular evidence of aspirating/refluxing but hopefully adding the reflux med and with Riley still not drinking that will continue to improve.
Riley has several appts coming up in September including plastic surgery, bone health, orthopedics and pulmonary. In October Riley will be admitted to CHOP for his next round of Zometa (bone infusion therapy). During that admission Riley will have the MRI to check for Chiari malformation.
Until then .. Riley is excited to be back in school and in the 5th grade!!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💙

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