5/28 DUKE APPT

Sean lost weight:( HE IS NINE MONTHS OLD TODAY!!

So the local docs didn't send Sean's complete file. For example he is FTT yet the pedi office didn't send his growth charts/weekly weights WTF? The GI didn't send his endoscopy/biopsy results either. And none of his hospital records made it up there!errrr

We met the GI doc and his PA at Duke today, very thorough. I was impressed with that much, they don't want to repeat anything that was done correctly so they want his complete file before deciding on which of the treatment plans he thinks he wants to do. He says he will call by the end of next week with his decision.

Plan 1- IF the gastric emptying scan shows delay then he wants to try one of three meds (only remember the erthyro never heard of the other two) he has to have the radiologist read the DVD I brought up and needs to get the formal report from the hospital. He *thinks* he has slow emptying but values can differ so he wants confirmation. He will try this for a week if Sean's intake improves to >24 oz/day and he gains weight then he may continue with this plan and not do anything while trying to figure out if there is something metabolic etc going on.

Plan 2- NG tube placement (this concerns me for two reasons- I have read this exacerbates reflux?? he states he has not found this to be true and second my son has attempted to extubate himself twice, he has pulled out a chest tube and OG tube and completely tore apart the CPAP machine he was on in the NICU. He does not tolerate tubes on his face. Put a shirt on and he will leave the chest tube alone leave it out in the open and he pulled on it. Spoke with him concerning this and he said he would probably like to at least try and see if Sean tolerates it.

Plan 3- G tube ( this would happen if the NG tube gets pulled out by Sean multiple times or it may happen first) increase calories while trying to figure out what is going on. Supplement with slow drip feed overnight and let Sean just do what he wants during the day

Option- Nissan Fundo- on the table to be discussed based on what he reads further.

He wants to look at the biopsies from the endoscopy apparently they look at things more indepth and they may see something others haven't

Even though local doc told me the chromosomal micro array tests for CF, and metabolic disorders and other deficiencies that is incorrect and he will want to pursue that testing probably based on what he reads.

It would have been a more definitive day if the local docs had just sent the crap they were supposed to!

Priority- increase caloric intake NOW

then

figure out what is going on.

Local doc- not concerned that Sean fell off the percentile chart dramatically

Duke doc- very concerned with his dramatic fall off the curve.

Duke doc upset with local doc for sitting on Sean's case for so long.