Wednesday, June 22, 2011

Nannie and Matthew update

I was sitting down to write this post about Nannie, and realized I haven't updated on Matthew.  Let me do that first.
Matthew saw the doctor last week.  His pressure is creeping back up.  It is 24 right now, up from 12.  That is to be expected.  They dropped him down to one drop, but I don't quite understand why.  She expects his pressure to keep creeping up, so if you expect it to keep going up, why stop a med??  Beats me, but I'm not the doctor.  Anyway, he goes back in three months.  Once it hits the 30s again, she wants to redo the surgery. 
I know this sounds so bad, but it is so frustrating, I just wish they would leave him alone.  We are just buying time till he loses his eye.  I guess any time we can buy is worth it.  It's just hard watching your kids go through this garbage! 
OK so Nannie.  Ever since she had RSV/pneumonia/bronchiolitis in March she has had a chronic cough and runny nose.   They tried antibiotics on her, with no luck.  She's been to the ER where they said she had asthma and needed to see pulmonary.  I know ER docs are worthless and can't be trusted to diagnose anything, so we were just waiting to see pulmonary.
That appointment was today.
The doctor said on her x-ray in May, her lungs were very over inflated.  What the heck does that mean?  I have no idea, probably should have asked!  Anyway, he said that RSV destroys the airway.  I assume the cilia, but again, I didn't ask.  He said that since her RSV was so severe it could take up to two years for her to fully recover from it!  Holy cow, that's a long time!  He commented on how atypical her RSV was, since it hit her so hard and she was already so old.  He obviously doesn't know that my family is pretty atypical! HA!!  He then went on to say he had never heard of siblings with TAPVR and went on and on about how unusual that is.  Really?  Never heard that before!  Hehe! 
So, all of that to say, we are starting her on inhaled meds (pulmocort) two times a day and singulair once a day.  We go back after we get home from vacation in September to see how things are.  At this point, there isn't a stop time for anything.  I guess we play it by ear.
So that's that.  Nothing too exciting, just too long for a status update!!

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