Re: [CYSTIC-L] ? on home iv, going in

[Guest guest]

You will never guess!!! was in the hospital the week of Thanksgiving

and got to come home the Monday after. She also came home on home ivs. For

the first time, we also have the " tennis balls " or ready meds as our home iv

company calls them. This past Thursday the school nurse called and said the iv

wasn't infusing. We know the vein should be worn out by now (several years

using the same vein) so that was our first thought. Then I called my niece who

is a home health nurse and she said they have had several patients using the

tennis balls and the ivs seemed to stop up. Before starting another iv, they

got the iv company to send the older pump type iv infusion system. This

seemed to solve the problem for them.

Well, when Val had the trouble last Thursday I called Birmingham and talked

to the nurse who put her iv in. She suggested trying to " pump " saline in to

see if it could flush. We already had and had no luck. Then she suggested

going to the local ER and getting TPA which gets rid of blood clots. If the

local

ER wouldn't do this, since she is so young, she said we would have to have a

regular iv inserted to get meds until Monday since they don't do picc or mid

lines on weekends at Birmingham.

Well, we don't want a regular iv with the meds she is on. It will blow the

vein, some have said. So I called the local pediatrician. He did order the

TPA at the local ER but said to try saline and heparin first. Luckily, this

worked this time. The order is still at the ER if we need it this weekend, but

so far so good.

Anyway, back to the topic, the tennis balls. I love them. They are so much

easier. The only concerns I have are that there is no " beep " to wake me up if

I fall asleep during giving the meds and when we have trouble getting it to

go, there is no syringe to push to help it along if needed.

Other than these concerns, this method is wonderful. If possible, this will

be what we use from now on, or at least until they come up with something

else.

These are just my two cents worth. Hope it helps.

BTW -- my signature line will be changing soon as will turn 12 on

Dec. 17.

Her birthday and probably Christmas too will more than likely be spent in the

hospital since they are going to diagnose her with CFRD on December 16 when

we go back. Please keep her in your thoughts!!!

They did all the blood test and urine tests when she was in the hospital

last week. Her blood sugar fluctuates from 99-259. They want to get it level,

if possible. She did get higher readings only after the night feeds she gets

through her feeding tube, though. I am sure there will be many questions

soon.

Sue Pettit

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and

other

wonderful folks of course) at UAB Children's Hospital