I have been up late working on my "work." I just wanted to post really quickly...Eleanor started coughing again today. Even though people with CF are supposed to cough it usually means something is up and I concerned that it is the psuedomonas. We won't find out until March 25th but if you have a minute to shoot a prayer up about her cough it would be appreciated. I don't want the picc line and IV antibiotics to be for naught.
Thanks!
Coleen
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Thanks for the comment on my blog:
ReplyDeleteour pediatrician is 15 mins away as well, the problem we run into is when he's off. None of the other Dr's want to see her.
We began seeing Dr. Van Hook as well. But when Ayla had her liver Issues we were going to shands for a surgery, the pulmonary team saw her while we there.
The difference in care was amazing! Everytime I go there I get some new way that I should have been giving this medicine, or tips on that one...Recently I found that Nemours had Ayla on 1/3 of the Enzyme dosage she should have been on. I just don't see how you mess that up. I just have never felt truly confident in the docs or nutritionist there. So it's worth the drive for peace of mind to drive to Gville for me. Since we go there anyways for GI.
Dr Van Hook is always very nice- but I have just had one too many instances where I find something with Ayla wasn't done right..
So I just go there, but if it were an emergent situation I would still feel comfortable enough to go to her..
Have a good day,