Standing in my toybox =)

Standing in my toybox =)

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...

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