Mallory

[Guest guest]

In a message dated 11/17/99 11:39:47 PM Eastern Standard Time,

Ron88Jen@... writes:

> I am not sure if this works or not,

Nope, it didn't work for me.

Sally

[Guest guest]

Hi guys,

We finally heard from the doc (or rather we heard from the NP calling for the

doc who will still be out of town til Mon.). Anyway, we arranged through the

NP for Mallory to be admitted to Children's on Mondays for IV's (tune-up) We

had the discussion of how diff. it might be do do iv's with her (8-9 diff.

attempts each time she has had OP surgery), but basically he said we'd have

to talk to the doc on Monday re: that. He also said that the doc wants to do

a sleep study because after he watched the sleeping tape, it seemed there was

some " obstructive " stuff going on (I think he said midairway?). Anyway, the

NP said he " assumed " that the doc would order this " toward the end of her

hospitalization " to get the study done at her best, rather than her worst.

Dumb us, it didn't occur to us til after we got off the phone--that oh shit,

that means they actually think they are gonna keep her in the hospital during

the entire duration of IV's! (no they are not, ron said...) Anyway, guess

we'll be having a discussion about that on Monday with the doc as well. We

do understand that she has to be admitted for the pneumogram, and maybe for a

day or two, but thats about as much as we could agree with. This is an active

2 yo who just happens to have a little too much pseudo in her lungs....at our

hospital, they have always " isolated " them to their rooms in the past, no

playroom, etc..grrrrrr. Anyway, I guess we have to solve the IV problem

somehow in order to bring her home and do home IV's (picc line?, Port?

peripherals are out now that our wonderful former Ped. is still languishing

in rehab....) Now for more info, our hospital is apparently noteworthy for

being very bad at picc lines for little kids--and, in fact, was not

yet 3 when he went in for a picc and they didn't even bother to try (no marks

on him), just shoved in a femoral central line and were done with it. For

all I know, that means they don't even know what a port is.

Anyway, any advice appreciated.

Take care and I will update more later...we are purposely waiting til Monday

since the doc will be gone til then....so maybe we can play this weekend.

Jen

[Guest guest]

,

when was Mallory's age, it had to be done under general anasthesia for

a PICC line at our hospital (which is part of why we were thinking, heck, why

not just get a port then?) Our pediatrician doesn't seem to have alot of

confidence in anyone getting much of anything into Mallory peripherally

(called her a chubby little white baby!) I am not sure what to do.... After

's central line fiasco (they just put in the femoral central line

without our permission, after we had only signed consent for a PICC), I am

not very trusting of those docs when they have your child in the operating

room without you present.... Really, I don't know what to do! One of my

nurses at work (a pediatric RN who works for me) told me tonite, " just don't

let them blow all her veins and get her home after two days and we'll take

care of the rest " She thinks she can get the peripherals ok in Mallory if

given the chance. I just don't know how our doc will feel about one of my

employees putting in Mallory's iv's.....

Do you think they would freak out if we showed up on Monday with the IV

already in place? We have all the supplies.....Diane could just do it....

I am just kidding, of course, I am sure they would freak out. (although I

should point out that we did this last time Mallory was admitted---the Ped.

put in the IV at my house and the hospital did use the one he put in. the

only question was that the nurses wanted to know what size the IV catheter

was--and apparently they had bets going whether or not I would know, one even

said to just ask me the color of the packaging!! Of course I knew, it was a

22) Anyway, I would also like to know how successful people on the list have

been with keeping piccs functional with an active (wild) climber type

toddler.....

Thanks for the advice,

Jen

[Guest guest]

Jen,

has had lots of PICC lines but she never needed IV's when she was as

small as Mallory, so I am afraid I can't be of much help. She got them with

no problems until this last tuneup in Nov and then they could NOT get a line

in her, they tried 3 times the regular way, in the room, no anesthesia and

then finally they were going to do it in radiology before she had her sinus

surgery and bronch, so I assumed she would be sedated for the PICC line

placement. But something went wrong with their scheduling and she didn't

get the PICC line first and she wasn't sedated AT ALL and this doc I didn't

know tried for about an hour under the flouroscope to get it in and

something was wrong with her veins and anyways, he thought he finally had it

in but it hurt to push saline in and after a few hours her vein just pushed

it right out. We just ended up using peripherals and Ang had to stay in the

whole 2 weeks, and they had been talking about doing 3 weeks, but we were

all losing our minds (especially me ) and so they decided 2 weeks was

enough, plus our insurance co was ticked off because we weren't doing home

IV's. Hey we tried.

Well I guess this isn't very encouraging, sorry about that, but I will say

Ang had gotten PICCs from age 11-15 and she had done fine with them up until

that last time. Next time she needs IV's I don't really know what we are

going to do, we don't want to have to stay in the hospital all that time

either, even though our hosp lets the kids socialize and go to the playroom

and everything, it still gets old after a few days. PLUS the insurance gets

real pissed off too. I am thinking it may be time to go with a port, but

that depends on how soon she is going to need to be on IV's again I guess.

If I were you I would probably go ahead and go with the PICC, I don't know

how they go about starting them in small kids but I would insist on sedation

, so she won't remember it, and she won't fight it either.

good luck with the tune-up,

love,

Bren

[Guest guest]

Jen,

Forgot to mention that last year when was on IV's at home with the

Picc, it was ball season. He went to the ball park and climbed on

everything, and ran around and jumped and played outside, even went to

daycare. We kept the line covered up with an ace bandage and he would not

let anyone touch that ace bandage. If someone asked what was wrong with his

arm, he would say, " it's hurt, don't touch it " . I even had a heck of a time

trying to get him to let me take the ace off every day to check the line.

Sometimes some blood would back up into it when he was really active and we

would just flush it with 5cc of saline, no problem. Good luck to you.

Daelynn

[Guest guest]

Hi Jen!

The two times had a PICC (he's had several failed attempts and

ended up with a subclavian central line when he was 10 months old) and we did

home IVs we didn't have any problems at all. He is very aware of what he can

and can't do, whether it is in regards to his feeding tube or PICC, etc. He

even went to preschool last year with a PICC and we just told him not to wash

his hands at the sink, rather use Purell instead (just to make sure he didn't

get the site wet.) I definately recommend some sort of sedation, as the

placement and other attempts were very traumatic for him. The last time he

had a PICC I insisted that he be sedated as he is a very difficult stick!

They gave him something rectally and it took effect pretty quickly. When he

emerged from the treatment room with the line placed, he had no recollection

of what happened and kept staring at his arm wondering where it came from!

Anyhow, if you have any other questions please feel free to ask. I'm sorry

you're going though such a tough time right now! And I know how you feel

about getting out of the hospital as quickly as possible!!! The Drs. always

try to make us stay and I say no way...I can do this at home where it is

safer!

Fondly,

Liz {Mom of & , 4 w/CF}

[Guest guest]

Jen,

Maybe I missed something, but why are they admitting Mall, rather than doing

TOBI? As I recall you've been fighting this for a few months, but was the

PA just the final straw?

Hoping things work out,

(mother of , 11 wcf, and , 2 nocf)

----- Original Message ----- > Hi guys,

>

). Anyway, we arranged through the

> NP for Mallory to be admitted to Children's on Mondays for IV's (tune-up)

[Guest guest]

Hello there =))

Jen: I hope things are going well with Mallory's hospital stay. Fortaz is

the culprit for the stinky pee - and high doses can cause it to have a strong

sulfuric odor. When I've been on Fortaz for an extended time my skin picks

up the same odor but bathing, showering, scrubbing makes no difference. I

nearly scrubbed the skin off my body and it was still there ~ but disappeared

the day after stopping the Fortaz infusions. BTW - I also do not respond to

versed (none at all!) so they usually use visteril instead for me, but maybe

a higher dose will help next time. Hope the sleep study went well! Love ~