Krystena /Josh's clinic visit

November 12, 2002

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....

November 12, 2002

Wow...been there on the teaching hospital thing. I will NEVER willingly go back

to the UAMS med center. I was 5 or 6 months pregnant, and got extremely

ill...severe side and back pain with constant throwing up, had trouble walking,

it hurt so bad. Knew it wasn't labor...dunno how I knew, but I just did. My

midwife, after listening to my symptoms, sent me to the hospital. My husband

took me up to UAMS, because that was our preferred place to go, since they

didn't have a problem with my having a lay midwife.

After hours of excruciating pain, for which they would give me absolutely no

meds, and after a number of tests, they finally decided that they didn't have a

clue what was going on. (I don't remember this part very clearly...I hurt

really bad, and was so out of it that my mom and husband were doing all the

paperwork, and making the decisions.)

They finally gave me something for the pain, and gave me some pills in case I

had a kidney infection (they had found a little bit of blood in my urine), and

sent me home. I was still in bed a week later, because I still felt pretty bad.

And after spending a night puking my guts up again, I finally woke up my husband

in the wee hours of the morning, and we went back to UAMS.

After checking me out, one of the docs in training came in, and said " Wow,

you're a really interesting case. I'm going to have to get my supervisor. "

(Boy, isn't that what you want to hear?) They got her. She didn't have a clue

either. They never could figure out what was wrong with me. The pain gradually

went away over the next month or so.

Well, about 2 months after my daughter was born, I was doing some home

improvement stuff with my mother-in-law at my house. I started having a little

pain (other side this time, but same exact feeling), and then puked all over the

bathroom. My mother-in-law walked in to ask me if I was okay, and I told her to

take me to the hospital immediately. I didn't know what it was, but I knew what

it was going to feel like very shortly, and wanted to get pain meds as soon as

possible. (This was slightly more painful than my labor had been...btw, my

midwife said I had the hardest labor she'd ever seen.) We got up to BMC this

time (I refused to have anything to do with UAMS), and they did some tests and

admitted me. I spent a day or so totally drugged out of my mind on morphine

while they did tests, so I don't remember a lot of that day. I do remember

being very sick when they gave me the yellow radioactive stuff so they could do

one test on me...and I remember the tilting " enstein " -esque table they put

me on...that's about it. After they did that test, they told me I had a kidney

stone. They eventually had to take it out, and that was ok, because they

knocked me out for that...the afterward part was bad...I was in so much pain I

started seizing, and they had to give me opium and belladonna. Erk. I was

relatively ok after a few days, with just some lingering aching in that side.

But having had it explained what had happened months before on the other side.

The second one was bigger...(I had obviously eventually passed the first one on

my own)...it was the size of a green pea. That's how we found out that I don't

need extra calcium when I'm pregnant. If I get pregnant again, I won't be

taking calcium pills!

Anyhow, sorry for the rant, but I still really dislike those folks at the

University hospital...they couldn't figure out what a kidney stone was, for

goodness sake!

Shanna

mom of Triana, age 2 wcf