Children's hospital of Milwaukee

Waiting....

More waiting.....

Still more waiting.....

G's appt was yesterday. It was exhausting. We ended up spending most of the day there. We arrived an hour early for our 10:50 am appt, and when they took us immediately, we were so pleased that we would get an early start on our trip home.

The doctor was not pleased with how G has been doing. He said it was "totally unacceptable". He started her on a treatment for acid reflux. G was treated as an infant for reflux, and she has started describing symptoms to us that are consistant with a recurrance of this issue. He also changed her from her nebulized form of Pulmicort to the inhaled version - on a VERY high dose - an adult dose. This scares me to have her on so much steriods. Also, we just had her previous form of Pulmicort refilled for a 3 month supply, which costs us over $200. Now he doesn't want us to use it at all. That hurts. G's medications cost us hundreds of dollars a month and to have over $200 of brand new medication sit unused.....

He ordered many tests while we were there, and we spent the ENTIRE day getting everything done.....labs, radiology, respiratory testing, etc. I of course, looked all the tests up on the internet last night, and some of the things that they identify are scary - cancer, immune system problems...did I mention cancer?

He told us that there is a growing group of children who test high on tests for CF, who don't seem to have full blown CF, but have many similar problems and do rather poorly overall. He told us that the long term prognosis for these kids is not clear.

We should have all her test results back in about 10 really, really long days.