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)..so 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 there..so 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 cough..like 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 week..so 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/weeks...so 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 meds...so that's what's going on this time around...i also found out i carry the R553X mutation...

CF showing its ugly side

hello everyone...ok so vince had started coughing pretty bad and so we made an appointment with the CF center for tuesday the 13th..however the monday a week before i took him to the peds and he at that time had just a cold and 2 ear infections..he was put on zithromax for 5 days..but after 2 days he completly refused no matter what i did to help him...by friday he was worse and i chose not to wait the weekend out..so we went back to peds...and he wanted an xray right away..he didnt even want to wait until saturday morning..well luckily it showed no pnemonia meaning no admission! the ped said it could either be RSV or CF related...well RSV looks to be out now..which in a way is good..so its more than likely CF related (we will know monday for sure) so we went to the CF center this past tuesday and dr chmiel was impressed with how well the peds dr did on friday and how he handled things...vince had also been urinating alot more than normal so his dr of course says its not normal..lovely..NOT!...so we did his throat culture..went to their lab and did blood work (he screamed like crazy..the lab tech man gave him 3 stickers and a lolly) then we came home with a urine back to get a sample checking his kidneys and for infection..well i got 1 sample-but was left out too long..so they gave me a new bag..and it was a NEWBORN...needless to say..i was quite little and didnt fit..but i did my best to cover just so he could pee in the bag and then it fell off at some point..so now we were sent home with the correct size and let me just say those bags are pure cruel to a little boy!!!!!!!!
vince's med list also changed..
he gets ventolin-4 puffs 2x daily
albuterol-if run out of ventolin
pulmicort 1mg (2 .5mg viles) 2x daily-when sick
pulmozyme-1x daily
hyper-sal--2x daily
zenpep-2-3 per meal w/fat
zantac 1.5ml 3x daily
miralax 1/2 cap up to 4x daily

november '11 update

ok i know everyone has been wanting me to update about what happened yesterday!!
for those still learning about CF vince can become constipated easily because of the amount of mucous throughout his body..he is on miralax as needed for this..in fact he just had some maybe 4 days ago and things moved the way they should (a little too well)...well he got backed up a bit yesterday and when i changed him i found enough blood to cause worry..took the CF center almost 2 hours to return my call..luckily peds was on top of it and had us an appointment and a call from the ped before the CF center contacted us...anyway by time we got to the dr it showed negative for blood,HOWEVER..the dr said its obvious its there (especially since he eats nothing red!) the dr thinks vince strained to go to the bathroom and tore something/broke blood vessles on the inside...we are gonna d miralax every day/other day now instead of as needed..we are to go back right away if there are any blood clots..
on a good note,his lungs and ears looked great and his belly is still soft..but he has not gained much weight since his birthday back in august,but is still near that 50% goal mark...

surgeon update

ok so,we went to the peds surgeon today to get a 2nd opinion on the 2 cysts on the back of his head..the surgeon says these are lymph nodes that are enlarged trying to fight off an infection he has..which he is coughing and and sometimes trying to puke from it...the surgeon wants to leave them go..he wants me to check them atleast once a week..if they grow at all in size then the surgeon will drain them,possibly test them and if needed remove them..since we were in cleveland and vince still has that cough i walked up to the CF center without an appointment and was able to get a throat culture done..those results will be in monday...

bad news...

ok so,vince started coughing shortly after CF clinic..we were told his staph was 2+ rather than being his normal 1..he also had ecoli and an unknown bacteria (that we were not told about) well with the cough he was started on Cipro for the staph infection..he has also been pretty constipated getting miralax 1-3x daily wasnt doing anything (which is VERY odd) along with there being a neon yellow fluid..it was not shiny meaning it was not greasy..so we called the dr back and they wanted him tested for C-Diff and constipation and then we will be treating the unknown bacteria...so at the peds we got BIG news when i found a lump on the back of his while finger combing his hair..i mentioned it to the dr who then found another lump..both are pea sized,soft and move..so these indicate cysts rather than lymph nodes..however i am scared and am wonering if i should demand more testing on these such as doing an MRI or a CT scan...im afraid of these more serious than "just a cyst"...peds think for sure vince is constipated because its not likely for him to of gained a pound in less than a month..we did 1/2 an enema this morning and had "ok" results..we are to do the rest later today..and increase miralax even more...we should have the C-Diff results tomorrow...please keep vince in your thoughts and prayers that thse cysts disapear..

potty training

ok,as you all know vince is now 2 years old..i have mentioned before that i want him in preschool both at age 3 and 4..i want him to have the social skills and i want to see how his health is before school "matters" now i know of atleast 1 school that i can get him into and he would not need to be potty trained..but this is a private school which could get costly! if i put him in the public preschool he qualifies based off medical needs for free schooling..but would need trained..he knows how to take his "diapy" off,take his pants off,sign potty,wants changed when pees or poops..soo...how do i go about it..i know 1st thin in the AM..but then what..every 1/2 hour? after he eats? do i give him a book to try and occupy him so the time goes faster? what about when we are not home? he is starting therapy twice a week 30 minutes from home and is afraid of the "big potty"...i have heard plenty of times that boys take longer than girls...but i feel i should atleast be TRYING! please give me all the info you have :)

small update***

ok,so after vince not eating the past few days and puking or atleast gagging when we give his enzymes,so i called the dietician and we talked alot! she says to take him to the peds for a possible ear infection or sore throat...she also still recomends behavior therapy (but finally admitted,the therapist would be counseling us,not vince) we have tried everything and i am not gonna go to a counselor on how to feed/raise my baby who has been nearly perfect his entire life! the dietician is happy that i am putting vince in a toddler group food clinic where they address both sensory,behavioral,health and medical needs all involved in each child...its a 30 minute-1 way drive..so 60 minutes 3x a weeek..but help me grow has agreed to pay the gas money! vince ate sweet potatoes once really well...and then dinner was his once favorite yogurt..he fought at 1st,then i gave him his prize bowl (with his rewards and treats) and he took 2 bites with any fight...then gagged once and puked TONS!!!!!!!!! dietician also mentioned a blockage which i didnt believe until tonight when he had sweet potatoes again and began gagging towards the end...hes still pooping a good amount (although hadnt gone all day saturday) so depending on how he does food and poop wise tomorrow will determine either a ped visit or an ER visit...
and another thing..his toes used to crack on the bottoms in the winter with footie pjs..well we got his toes healed up by leaving his feet bare as much as possible..then we started putting footie pjs on again with the AC on (as he loves it) and his toes are bad! his right big toe looks like it was sliced open with a knife on the bottom! its not actually bleeding,but you can see the red open sore and its the whole crease where the toe bends under...we showered him and then put some A and D on it with a band aid (and tape to make it harder for him to get off) hoping it starts helping..but i think i want his toes tested for bacteria!