Update, and other good stuff

[Guest guest]

Hello and thanks to everyone for asking and remembering . We had a

great day, believe it or not. He was quite ready for the PICC line and

didn't even utter so much as a whimper. I think maybe once he said ouch, and

I think that was the tegaderm coming off the other arm, lol. I don't even

think it was the versad, though, because it had only been 5 minutes since

they gave it, according to the sedation nurse (and that seemed about right)

when they inserted the picc line. He was just terrific. I am really really

glad there was no traumatic stuff involved, too.... he even has been saying,

yeah, and I won't cry when I get my next picc line either, lol. He

remembered every detail, right down to the funny balloon face one of the

nurses made for him (very good thing one of the nurses had the foresight to

remind me to take it along just in case, rofl....) The sedation hit him

right after the x-ray to confirm placement....the x-ray tech sat him up and

he just fell right over! Too funny, good thing it wasn't too little too

late..... but he was fine. So, anyway, I would def. say it was the EMLA

creme and lots of preparation psychologically for him that made the

difference.

Now, about the nurses, we had a great experience. The PICC line nurse that

our doc prefers came in on her off day just to do his Picc line and one of

the other PICC nurses who had helped trouble shoot with Mallory's the second

day she was in the hospital was there and helped. The nursing supervisor

(picc nurse) actually met us in the lobby even. I can't say enough good

things about how great they were.

is on Gentamycin and Fortaz, both every8 hours and there has to be an

hour in between each. We are running both with the medi infuser this time,

as we requested to do this with the fortaz too, since we ended up with

trouble pushing the fortaz toward the end of Mallory's iv's. It takes a

little longer, but it will be worth it if it helps the picc line last longer.

He will be on iv's for 21 days since its for sinus stuff. We didn't ask,

but I think that the reason he is getting Gent. instead of tobra is that he

is already on Tobi as well as tobra nose spray. I would have been worried

about his blood levels getting too high with adding tobra iv as well...I

guess the doc must have been too.

He is doing great with the IV's just like last time. He wants to push the

saline and heparin in himself, so we let him. He seems to like it.

OH, and tonight, this is kind of bad I guess, started asking me about

death....this is a good time to remind ourselves that when kids ask questions

to always ask why they want to know....so that we don't answer a question

they were not really asking. This really illustrates that point! So, I

asked why, and he wanted to know when I was gonna die, of course I said I

thought not for a long time, why do you want to know? Then he wanted to know

when he was gonna die, also not for a long time, why do you want to know?

Because he wanted to know when he was gonna see our little dog Bitsy up in

heaven again! (see, here I was ready to assume that it was b/c of the IVs or

CF.....good thing I asked first!!) The thing is, Bitsy died a little over a

year ago, goodness, is only 4! Well, he'd watched a movie...blah blah

blah and some animal died..... (disney, what were they thinking, lol....)

Anyway, so fortunately nothing earth shattering other than normal kid stuff

in this conversation. BUT, is my most sensitive child anyway, of all

of them (Miranda is sensitive somewhat, too, and more dramatic, but is

even more sensitive, but more thoughtful, reflective and less dramatic....)

Anyway, so these things effect him more. The other night he was crying about

Bitsy just out of the blue. Anyway, so remember, if your kids ask about the

dying thing, it might not be even related to CF...just think, I almost jumped

the gun and learned the hard way!!

I hope everyone is ok, I will reply later to various posts under separate

title....

take care,

Jen