As of Thursday, nothing has grown out on Emily's cultures. The nurse did say that it can take a couple more weeks for some organisms to grow out. I know this is so because last April Emily had an excellent report and then two weeks later they call back and tell me she has ORSA--it took nearly three weeks for it to show up. So, for now we wait and wonder. A part of me wishes she would culture something so we could treat it, especially since we are baffled by her decline in PFTs--at least if she cultured something there would be an explanation for this.
I have been sick most of the weekend--I get these stomach attacks that have all the symptoms of gall bladder disease--and it takes me a few days to get over it.
Douglas won another basketball game yesterday. He had eight points himself--I didn't get to see it, but I got a nice recap from the boys.
Well, need to go work on tax stuff, so have to go for now!
I started this blog to keep everyone updated on our busy life and Emily's struggles with cystic fibrosis.
Monday, January 19, 2009
Saturday, January 10, 2009
Some Good News
Well, Emily had her bronchoscopy yesterday. The doctor reported that her lungs actually looked really good--not as much secretions as they thought there would be. So, we did not do an admit and IVs at this time. We will wait for the culture from the bronchoscopy to find out what she may be growing down there and then make plans for our next steps from there. We went ahead and stayed the night up there with my folks (they already had a room booked)--that way we had some time to rest before we traveled back home. I got home today in time to see Douglas' basketball game. He had a great game with many assists and his team won 42 to 29--they lost to this team the last time they played in a double overtime so today's was an exciting game!
Will post again when we get results!
Have a wonderful rest of the weekend.
Will post again when we get results!
Have a wonderful rest of the weekend.
Saturday, January 3, 2009
Emily Update
Well, I talked with Emily's doctor yesterday. Since she has been on oral antibiotics since early November, and she is still not "clear", and we have had a slow decline in PFTs and she has lost some weight . . . we are going to do a bronchoscopy. It has been two years since Emily has had one, so the doctor thinks this may help us find something we are missing. We may start IVs at that time as well, depending on what they find with the bronchoscopy. She will probably go in on this Friday, but we will finalize the plans on Monday. I have already talked with Emily about this as she likes to have a full grasp of things that are going to happen to her (after all, this is the girl who since the age of 4 has refused to look away when they draw blood). I am apprehensive as we have not had to go down this road in so long, but I try not to show it in front of her. It will be a long week back to school with all of this looming ahead, but I know in my heart that we need to do something to get her back to her baseline. I will follow up from there . . .in the meantime please pray.
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