Standing in my toybox =)

Standing in my toybox =)

Wednesday, February 29, 2012

CF clinic update 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 therefore both his body and brain will grow at a slower 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 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?

Sunday, February 26, 2012


ok so i KNOW vince needs a gtube..he is 2 1/2 years old..he was born at 8 pounds 6 oz...he gained fine once on enzymes and always has since (for the most part) at 9 months old he was admitted with pnemonia (his worst one) and at that time ate french fries/ice cream/jelly...once home he quit eating EVERYTHING! baby food went from 2 jars down to 1/2 and he would gag on anything else i offered even his cereal...he eventually started eating cherrios and fruit snacks and vanilla yogurt...he was put on pediasure at 10 months for nutrtional he got older he refused and gagged on more and 18 months and we switched clinics and he was put on a higher calorie formula..but is still refusing the enzymes...he never had to many greasy now that high cal formula is no longer working..even when increased..and when increased it is blisterin his butt...i KNOW he needs enzymes/vitamins/acid reducer/salt/allergy meds....but that is really not easy in our matter what we do he usually pukes from forcing those things...our entire famil in now in agreement that vince should definitly get the gtube...the dr's just say they dont want to perform the surgery for "no reason" he has not eaten in almot 2 years and has gotten worse...what makes them think he is gonna eat out of the blue? so my question is how do i cnvince the dr's that its time...he needs this tube? he is very aggressive and i've heard it can mean he is hungry...he also whines alot he will say he wants more milk/yogurt ect but then begins advice?

Wednesday, February 22, 2012

biggg update

ok so here it is...vince has had a cough most of the winter,especially since december! he has also been stuck at 30 pounds for quite some time...he is in a major refusal of his enzymes (pills to digest food/absorb fat) with that being said yes it will be hard for him to gain weight..but he doesn't have a terrible innsufficiency..but it is we have increased his pediasure...which is return is sending out more grease and now he has a blistered looking rash on his little bottom! he hates being changed right now and will wait to tell us he has pottied so he doesn't "have" to be changed...the CF center was notified by the peds (who is awesome) about the weight issue and they are not pleased but do not feel he is in danger yet..and will not yet do a feeding tube..ugh really? just put the thing in so he can get his meds and used to it before he starts school this fall...ok now onto the i said he's had this cough most of the winter with a few day/to a week breaks..we have tried a few antibiotics-both oral and inhaled..neither have which helped long term..we even increased his inhaled steroid and that did not help but more than about a now tomorrow we will start a 5 day course of oral steroids and if this does not work there is a POSSIBLE admission..that i am planning to push for!! he has not been admitted since august of 2010!!!! and i feel he has been on plenty on antibiotics in the past year and a half..and now they are not helping more than a few days/ let's get him in and get him "fixed" for a while again! i was told cleveland's policy is to admit him and get the picc line in and then after about 3 days on abx if he is tolerating everything we would come home with a picc and that's what's going on this time around...i also found out i carry the R553X mutation...