A Lil' Boy's Journey to Live….

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. 💜♻️❤

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