Hospital Stay #2 for 2011

So, we arrived at UNC Children's Hospital on Friday, April 8. Emily started her day with a bronchoscopy--since nothing had shown up on the cultures and it had been a couple of years since she had a bronchoscopy Dr. wanted to make sure we knew exactly what was going on. The bronch made for a long weekend of fever (and some nausea), but by Sunday evening she was feeling a lot better. The bronch revealed that her lower right lobe is filled with secretions and there seems to be a lot of infection which explains the drop in PFts to the 70s/80s (she is normally well over 100%). We have started on two IV antibiotics--tobramycin and timentin--two new ones we haven't used before. These may change depending on what the cultures reveal tomorrow from the bronchoscopy. We will be staying at least until Friday, maybe longer, depending on all the variables--lung function testing, culture results, etc. Dr. needs her here to do everything we can to get her numbers back to where they were. And we pray that we can make that happen. Emily is in good spirits--she always seems to crack a joke or give one of her infectious smiles...even when she is feeling bad--so many of the kids here seem to be that way.....guess we could all take some life lessons from them! :)

Almost Three Years

Well, we were one month shy of being off of IV antibiotics for three whole years! Unfortunately, we went for a check up at Chapel Hill last Tuesday and found out by Friday that Emily had cultured pseudomonas. This was the first time she cultured this so it was a little overwhelming. Anyway, we came in and did a bronchoscopy yesterday and they put in a picc line. Emily has been the bravest girl ever, once again. When they changed the tape on her picc line today she didn't even cry--she said "that's the first time I didn't cry!" I was like "so true". Then she proceeded to tell me a memory she had from her first hospitalization when she was four--"mom, remember when the lady came in to change my tape and I locked myself in the bathroom." I had forgotten all about this, but it sure brought a good laugh for us this afternoon.
We hope to be home by Friday if all goes well. We will do IVs at home for three weeks. I will try to be a better blogger and update like I should--I totally missed some important milestones since my last post, like sending my oldest off to college. Will do a better update when things get settled.

Final Bronchoscopy Results and Great Strides Kick Off Meeting

Well, after allowing Emily's cultures to grow out from the bronchoscopy for several weeks I finally had confirmation that she grew no bacteria! This is amazing news, at least we know there is not a terrible bacteria that is responsible for her slight decline in lung function. So now when we go back to the dr. next month we will discuss what could be causing this . . . like I have said previously her current function is not bad, it is just not as high as we have had it in the past.
On Thursday we had our kick off meeting for team captains for our Great Strides walk on May 30th. There were several new faces/teams--Donnie's high school National Honor Society is going to have a team, there was a mom of a one year old who was just diagnosed, and a 19 year old girl with CF who is walking in Great Strides for the first time! It was an exciting meeting to know we are going to grow our walk this year-it is only the second year we will have it in Monroe, NC (Union County) and I am so excited about the prospects!

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.

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.