Standing in my toybox =)

Standing in my toybox =)

Tuesday, July 19, 2011

eye opener

so yesterday i learned of a little girl with Cystic Fibrosis (who i have talked to her mom here and there) but i learned she had yet again been admitted (she was just in like a few weeks ago) but this time i was told she was coughing up blood,had one of worst CF bacterias in her lumgs (MRSA) and that her O2 was dropping and she was on oxegyn at night...i was in complete shock!!! how could this little girl who is vince's age be so sick!!!

no family of sam or i's can honestly say they understand what would happen from SMOKING,or the wrong bacteria getting in his would each of you feel if the dr's did a bronchoscopy on vince (camera in the lungs) and found grey mucous...because you THOUGHT you were far enough away!!! but yet no one thinks about the fact that his mucous in his throat and lungs is THICK and STICKY! i think every day how many people that i know actually think about vince and the fact that any little cold could become fatal...

we have tried so hard to let vince be 100% normal lately...we try not to freak out when someone doesn't sanitize anymore...we let him be a boy and play in dirt and rain water...and he just loves it! however i am terrified to see his next throat culture! it has been 4 months since his last culture..which showed staph and psuedamonous..well i believe the PA is gone because he always has a cough with that! and the staph is in every culture! before his 1st blockage i was able to get him to start eating a few new flavors of baby food..however now he is back to sweet potaotes :( i had to buy 2 cases today and im hoping it lasts through the weekend..

i honestly have no clue what i would do if i was in this other mama's spot..its terrifying to see what just 1 bug can do to our babies :/ they dont deserve this...and they surely dont deserve RUDE people who think its ok to smoke right behind him! its not his fault he has CF and if you want to kill YOUR lungs than you can go do it where vince is no where to be found! he shouldnt have to move,and i shouldnt have to move if i'm the one holding him! what if it were your kid?!?!?!

Saturday, July 9, 2011

1st blockage

well we went camping over the july 4th was very hot but vince tolerated it very well..we had no concerns..until we got home monday night and he had thrown up (a ton) and so we chose not to tell the dr since it only happened once and he had no sign of infection (cough,fever,ect.) well tuesday comes and he puked again right after dinner..again we weren't gonna tell the dr for one more day..until he threw up for no reason about 30 minutes later..both times were alot and that 2nd time he was dry heaving and holding his throat as if he were was scary! so right away i emailed the dr (much faster response than calling) and the dr thought since vince had no other symptoms other than very blood shot eyes that he probably had a small sun i accepted that he'd be fine in a day or 2..i knew he was in the sun alot..well then on wednesday he didnt poop and also puked but not as much..then thursday no poop and i emailed the dr before the weekend came..and even though he wasnt pooping and he was puking he had no hard stomach like it should be during the dr said to take him to the CF e.r or locally..we chose locally and i said his symptoms and the dr even knew what CF was!!!!! i felt a bit better at that point..and so he orders an xray and says that vince had a blockage right at the end that was there to come out but couldnt..and that his intestines and stomach was filled with soft he said he would try an enema and if that didnt work he was gonna really have to torture vince..and on that im not going in to detail..its hard just thinking about! so anyway the enema helped but that was scary as well..vince got a good amount out the 1st time but then while trying to go more (in a 2nd diaper) he zoned out and had poor balance and was was terrible..sam and i were both scared!!! so the dr let us go home since vince got 1 good diaper and 1 small diaper's worth out in like 15 minutes..he said continue miralax and the rest should work its way out..well its 3pm here and vince has yet to go and is 100% cranky and lazy..i bought he pediatric enema to try tomorrow..but otherwise we will be heading back to the ER atleast for an updated xray..this is his 1st blockage! and when we got home last night (well at the resturaunt) he sucked down a pop...i allowed it as a was mine so it was diet so no sugar...but he enjoyed that..then we got home and he ate a good amount and took 4oz of boost..and wanted more but began gagging...