Rebekah's first home infusion

[Guest guest]

Well, it was interesting. The nurse was clearly used to dealing with ped

patients and very good with Rebekah, but I don't think she had ever accessed

a ped port. She commented a couple of times about how small the port was.

Also, the emla cream seems to take about 2 hours to really numb up Rebekah,

so, after an hour of emla, she was still feeling a lot of the poking.

The nurse could not get blood from her arm or her hand or her port. So much

for blood work. She had to poke twice to get the needle into the port.

That wasn't the greatest, but the rest of the procedure went well. They are

going to bring a fanny-pack infusion pump for Rebekah next time. We all

found it a challenge to run with the IV pole after her or to keep the baby

from pulling on the pole or the tubing.

She had some trouble pulling out the needle, and, in the confusion at the

end, she forgot to flush the port. She had moved the syringes of saline and

heparin out of Leah's reach and forgot them.

SO, she had to come back at 6:30 last night (in the middle of trick or

treating) to access the port again to flush it. I had to wake Rebekah up to

put the emla cream back on for the two hours needed to numb the skin. She

had to re-establish the sterile field, but the needle back in and flush the

port, and then remove the needle again and bandage. That poor kids had LOTS

of hole in her and lots of adhesive leftovers all over her chest!

It was nice NOT being in the Hem's office, but it wasn't the greatest

experience. Rebekah handled the second " big pokey " (as she calls it) better

than I did. And the nurse was very apologetic. She didn't want to tell the

doctor about the mistake, though! We'll try it again with this nurse. She

is the only ped nurse at this company, so unless we find another home health

agency to carry Rebekah, she's the only option. Turns out that the home

healthy agency that picked up Rebekah is run by the Catholic Church for poor

and indigent patients. Rebekah was picked up by them since she " isn't a

money maker " (their quote, not mine). I suspect that several agencies

turned her down.

All in all, we liked the nurse. The nurse stayed within a few feet of

Rebekah the entire time and wasn't unnerved by the other kids being around.

I think she can learn to do a better job and, you can bet, I'll be reminding

her about flushing the port next time.

And so, the record stands: seven infusions all with some sort of

complication or crisis!

Pam

Mom to 4

Rebekah, 3, CVID

[Guest guest]

I am so sorry that Rebekah's infusion went so terribly. I am glad that you

both liked the nurse. That can make a huge difference. How often is she

getting the infusion? Hope things go better next time. Keep us posted.

Belinda Rose,

Mom to Allyssa and Cassie

[Guest guest]

Pam you might also write out a procedure protocol card. Just write out how

you....like it done. Then when you have a non-regular nurse you are not at

their mercy to do it right. Have them check it off and you also have a record

that everything is done. I encourage our patients to sit down and do this

with the nurse so that everyone feels comfortable. My nurses are very happy

with this because it is easier to remember everything for each individual

patient especially when we have many patients. As a mom then you have a

better understanding of what needs to be down and you can relax and know that

it will get done. BARBIE

[Guest guest]

In a message dated 11/3/02 4:34:38 PM Central Standard Time,

pmork@... writes:

> think that things will improve (right!) despite

> some of the idiots (you wouldn't believe these people) that we've had to

> deal with. Can your read the sarcasm in that sentence???

I read your last post before this one. Believe me, I know sometimes that we

have to deal with idiots. And, it is a shame that these idiots are depended

upon by the lives of their patients. Sort of scary isn't it???? We are

praying that things do start to improve for little Rebekah. I guess they say

things can only get better sometimes. Good luck.

Belinda Rose,

Mom to Allyssa and Cassie, igg immunodefficient, asthma, sinusitis, IVIG for

6 years, heart condition

[Guest guest]

Oh, it wasn't as bad as her previous six infusions! I'm trying to stay

optimistic (Bah humbug) and think that things will improve (right!) despite

some of the idiots (you wouldn't believe these people) that we've had to

deal with. Can your read the sarcasm in that sentence??? <BIG GRIN>

She's being infused every 21 days, so, if nothing else, the nurse will get

experience just by the frequency of treatment. We are now 18 days from the

next treatment. And you can BET that I'll be standing behind her holding

the syringes with saline and heparin the next time!!

Pam

mom to 4

Rebekah, 3, CVID

Re: Rebekah's first home infusion

I am so sorry that Rebekah's infusion went so terribly. I am glad that you

both liked the nurse. That can make a huge difference. How often is she

getting the infusion? Hope things go better next time. Keep us posted.

Belinda Rose,

Mom to Allyssa and Cassie