Standing in my toybox =)

Standing in my toybox =)

Wednesday, April 17, 2013

biggg update!

it's been a long time since i updated here...vince was doing REALLY well for a long time! lung wise he went from i believe april-october with no antibiotics reguarding his lungs or sinus (he had a few skin infections this summer)..on september 21,2012 we had our 2nd baby boy Trevor (who does not have CF)..vince was up to 34 pounds,taking all of his medications! in november he started preschool-going 4 days a week from 1-415pm! he has learned so many wonderful things that he would not pay attention to at home! he knows how to spell his name and knows most of the alphabet! he can easily count to 10 and even knows his last name! he's only 3 and has a full year left to go in preschool so i am not worried..he also knows all his colors and most of his shapes now! it all started a week before christmas he got his 1st cold of the season and had a double ear infection..this winter he has been on 99 days of antibiotics (going on 101 now)because he has CF that cold turned into a sinus infection..his symptoms will be gone maybe a week and then 20 total days were not due to his CF/sinus but 10 for an ear infection and 10 for strep throat..he also tested positive this winter for influenza B...his brother and i (mom) had RSV this was not admitted even though his o2 was only 94% and he was not eating well they told me to give him some of vince's albuterol and to watch him closely!
  **NOW** we recently saw an ENT (ear/nose/throat) dr..mainly to clip his tounge in hopes of helping his speech..they also saw how sick he'd been with sinus issues and chose to do a cat scan that day in the office (talk about a silent panic attack,while trying to remain calm in front of a 3 year old) but he did wonderful though it..they showed and explained the CT to me and his left side (near his nose/under his eye) is great about a quarter size opening and moslty air with little mucous! his right side was the size of a golf ball or maybe bigger and completly filled with mucous (it looked like a water balloon ready to explode)..they said the head sinus cavities dont develope until around age 5 which is great because it's not causing vince severe headaches at this point! they could see his adoids are almost completly blocking his airway so while having the tounge clipped he will have his adnoids out..he will also have his sinus cleaned out and the bone shaved to make the nose opening bigger and allow infections to properly drain..(he will have no external openings/scars) his tonsils are medium size and he may grow into them so the dr is going to try to leave them alone since he's never had an issue with them before,and it would make for a much longer recovery..vince will be intubated during surgery meaning he will having a breathing tube in his airway to protect him and to also ensure that blood doesnt drain into his lungs during these procedures...while having all of this done the CF team has chose to do a bronchscopy which is where they go down into the lungs and clean them out and take a bacterial culture..the last one he had done was the day before he was 1 month old...through all of this vince will be admitted atleast overnight-a few nights for observation since we live so far from there! they have approved trevor to stay with us and we all can sleep in vince's room as he has said he wants us to! i am definitly nervous but we have informed vincent that this will make him feel much better!

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