Today was the first day we had to draw blood. OMG! Worst experience ever! lol There was one nurse who was actually putting the needle in her arm, another nurse holding her arm, and another nurse handing / taking the vials of blood. Then there was the a Child Life Specialist (one of the 6 ish people we visit with each month) who was there for moral support. My mom was at her head, and I was at her feet. The poor girl was crying/screaming like i had never heard before. I hope this gets better with time!
|Her arm after blood being drawn 😦|
But other then that, it was a pretty good visit. Apparently at the last visit she cultured Staph but no one called us, nor was he planning to treat it. So ya . . . I guess there are some things that can be cultured but he won’t treat then because there really isn’t a treatment against them.
He said to just let her cold run it’s course. He doesn’t think her cough is really CF related, but more sick related. If it gets worse or she gets a fever to call.
He told me to let her be a normal kid this summer, just make sure she gets lots of salt and water or pedialite. Stay away from other people with CF and sick people.
The poop situation is handled i guess lol I told her that the CF foundation needs to get on it with getting a poop book for us to compare to.
Oh and I also asked the nutritionist about leaving enzymes opened (like pre opening the pill) and she said no longer than 3 hrs and they will still be active.
She didn’t gain that much weight, but they weren’t worried about it. She was 13.11 at the last appointment and 14.8 at this appointment.
Finally the nurse at the checkout / checkin station was new and messed up my next appointment. She schedule it for 2 months from now instead of one month. I didn’t realize it until i left because we were still dealing with a tramatized Meesha. So now i have to wait for someone to call me back about the whole matter.
oh and we moved her to 3 enzymes per week via an email conversation the week before her feeding.
In case you’re wondering her cough is already getting better 🙂