Krystena /Josh's clinic visit

[Guest guest]

Well we're back!!

I stress the WE. Though Josh still has a nasty cough but his lung

functions are closer to baseline than they were 5 weeks ago. So we

continue the Cipro, add Septra, and continue Zyrtec (sp?). We have 3

more weeks to see if this will help, if not , the dreaded hospital

stay!

Krystena, I had to go back and look in my little book to see exactley

which genes were identified. I remembered the dreaded Delta F508, but

the other did not come to mind. It's been a while...It was R117H.

I have gotten in the habit of writing things down. Not only because

its alot to deal with but being at a teaching hospital, you almost

always have to double check things. Today was a prime example. The

doctor told Josh, you will be on Zyrtec, Cipro, and Septra. Josh

hasn't taken Septra for a while and he gave her a funny look. She

told him don't worry, it's not the one that makes you pee orange,

that's Rifampin. Well when we went to leave the " dr. in training " (I

dont know what else to call her) Wrote the scrip's for Septra, Zyrtec

and Rifampin. I told her this isn't right it's supposed to be Cipro.

Even Josh knew this. We had to wait another 1/2 hour for her to track

his primary doc down to confirm this before we could go. On the way

out making the next appt. the nurse told me 10:30 on 10/03. Yet I

watched her write down 10/10 on my card. When I asked her to double

check because she had told me a different date. Sure enough, it was

10/03. The Doc was to be out of town on 10/10! There have even been

times when Josh has been in the hospital that they have forgotten to

feed him! Luckily he is old enough to let somebody know. What if he

had been someone infant. Just goes to show you, as parents, we have

to be very active in our childrens care. And if in doubt, always ask.

Well, the twins are asleep. I'm going to bask in the silence....