Sorry all with the delay in updates....we have had a lot going on in the last week and Gram Byrum is sick so it has been me and Bubber for a couple days. So what is going on? I will try to get right to the point.
We have found out that Caleb has a cyst on his earlobe that is actually, sorry to be graphic, pussing and bleeding off and on. He also has been a little more congested than normal and has been throwing up mucus and his earlobes have been swelling. They also were concerned that Caleb had a condition called sarcoidosis. To read more about sarcoidosis go to http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html . In addition, Caleb has run a pretty high fever twice in the last week. So what is the cause of the fever?!?!!? Well they decided to do a catscan to check his sinuses and his lungs to check for sarcoidosis. First of all his lungs look good, no evidence of nodes which leads us to believe there is no sarcoidosis. When there were checking his sinuses they got a glimpse of his ventricles, which is what the shunt works to drain. They were concerned at the size of his ventricles as they looked larger so they took him back down for another CT scan of his brain. Good news, they think the shunt looks like it is operating and the ventricles do look a little larger than they did in December BUT that could be,good news, that his ventricles are growing with his brain. Good news that his brain is thriving. His ventricles though are very generous and probably will be the neurosurgeons are coming by today to see if they need to adjust his pressure setting to maybe allow the shunt to drain a little more than what it has been draining. So again what is causing the fever, they are concerned about the cyst on his ear or a potential central line infection. We should know more sometime this afternoon.
As far as when we are going to Duke, we are still waiting on a date. We do know however that insurance has approved transportation, so he will be flown by a jet with Children's transport team down to Duke. So he and I will go by ambulance to Pittsburgh airport and then fly from their to Raleigh, Durham airport. So I think I have added all I know at this point. Again, sorry with the delay in updates but as soon as I hear anything more today I will definitely post it.
4 comments:
What on earth made them think Caleb has sarcoid? The most common demographic for that is a middle-age african american woman--and Caleb is none of those! Also, how does a kid with reduced immune function get an auto-immune disease? There is a skin test they can do to confirm it (sounds gross, but they inject proteins from a known sarcoid patient under the skin and see if there is a reaction--that's a positive test). I hope Caleb's ear gets better soon.
Hugs,
Sarah, Jeremy, and Evan
I will continue to pray for you all and I hope the next week is better.
Hugs and prayer,
Crystal and Eva
Thanks so much for the update...you have been in my thoughts. Please keep us posted.
Love, Amy and Maxwell
wow alot has happened hugs to u all
Post a Comment