ok...so i posted yesterday that things did not go well...most of you know that i went in wanting a feeding tube..vince has not eaten since he was 9 months old..he eats cherrios/lucky charms minus the marshmellows/crunchy nuts/fruit snacks/vanilla yoplait....he takes pediasure 1.5 but refuses all oral medications...he will spit and sometimes gag on enzymes..all other oral meds he gags and pukes up and sometimes begins dry-heaving when he doesnt have much in his stomach..his oral meds are these:::
zenpep 5,000-2-3 per meal
zantac 1.5ml 3x daily
salt 1/4tsp daily
CF vitmain 2ml daily
vitamin 1ml daily..
plus abx and steroids when needed
because he does not take his enzymes he does not abosrb most of the fat or nutrients in the foods he takes in..so therefore both his body and brain will grow at a slower rate..here is what happened yesterday!
yesterday..vince weighed in at 30 pounds he is in the 50% for weight and about 40% for height..which but his BMI right around 50% so overall he looks ok..but i dont like that i can see his ribs...his pulse ox showed only 95% which i believe is vince's lowest yet! but i was told they dont worry unless its below 93..and also i heard would need oxegyn at 90..so i didnt enjoy seeing a 95..i told the CF dr that both the ped and i along with sam and our families agreed on a feeding tube..he told me that it would be malpractice to perform this surgery on a child who is in the 50%...he says i am letting vince control me and that i need to be him mom and make him do these things..i told him he didnt understand and began to "yell" and say he did understand because he had 3 toddlers! ok well i bet none of them were in this situation...he said he made his son go a week without dinner until he ate green food..i have tried refusing vince his pediasure and after 2 days he quits asking because he knows he can not have it...i told him that vince does not eat and he said well he must be because he gained weight..(he's been at the peds all winter just about every week and has now lost weight..) so he doesnt even believe that vince doesnt eat..he says its all behavioral and that he needs to see a physcologist..even though he is currently being watched for sensory processing disorder! sooo....after all that he did not look at the blisters on vinces butt/mention the 95% o2/or even say when he wanted to see vince again! so i don't know where to go from here! he is the head dr at the clinic so there is no one else..pesd already agreed on a feed tube so i'm hoping he will refer us to a surgeon! and then i may possibly get a 2nd opinion from toledo..what do all of you think?