10/29/2013 IVIG treatment

We had an interesting
experience at Lila's
treatment today.
It started out
pretty uneventful.
The nurse had a bit of 
a hard time accessing 
Lila's port but 
that happens sometimes.

The immunologist
increased Lila's dose of IVIG
so when the nurse said the 
treatment time would be 
four hours.
 I asked her to
increase it.
IVIG is a very
thick product so
it can be difficult
for a little
body to process.
Also, rushing an IVIG
treatment can cause
more severe and
longer lasting side
effects than
if a treatment
is spread out for
a longer period
of time.
Our doctor has
instructed me
that Lila's
treatments must be
spread out for
at least 5 hours.
So even though
I think the nurse
was annoyed with me
I asked her to
change the rate of
the infusion. 
She did.

When Lila was
reaching the end of
her treatment her
machine started beeping.
Another nurse was
passing by so she came 
in to check out why the
machine was beeping.

She checked the IVIG bag,
which looked empty,
and said, "You're done!"
She unhooked the tubing
that went from the bag to
Lila's port and liquid
squirted out onto Lila.
I looked up at the
flush bag and it
 didn't appear that
any had been used.

I asked the nurse
about it and she said
that it was fine,
that enough of
it had been infused.

Our regular nurse was
busy so she said
that she was going to
de-access Lila's port.
I held Lila, like
I always do, 
and the nurse
started the
flush solution 
that is given
before the heparin.
The liquid in 
the syringe didn't move.
The nurse pushed
the syringe harder
but the solution 
still didn't move.
She started looking
at Lila's port and jiggling
the needle.  
I asked her what
we were going to do
and she said,
"I don't know".
She tried one more
time and then
told me it 
wasn't going to work.

I asked her what 
the next step was.
She told  me that
there were a couple 
of options.
I asked her to give
me the best option.
She told me it
was going to
take a little
while and I told
her that I didn't care.
Whatever we needed to do.
I was scared.
I knew that heparin
was necessary.

She told me that
we would have to de-access
the port, put more EMLA cream
on, wait for 30 minutes
and then re-access Lila's port.

At which point Lila
started freaking out.
She said, "NO!
I go home now."
And then she started crying.
Huge tears running 
down her face.
Sweet girl.
She never makes noise
when she cries.
She is silent.
You don't even know
she is crying unless
you are looking at her.
It breaks my heart.

I explained to her
that we had to do what
the nurse said to keep
her safe. And then
we called her daddy
so she could talk to him.
That kept her distracted
while the nurse put
the new EMLA cream on.

We went down to the 
playroom and had some
fun while we waited for
the EMLA cream to
work it's magic.
Lila seemed to
calm down while 
we were in there.

When the door opened
to the playroom our
regular nurse and
the new nurse were both there.

We went back down to Lila's
room and told Lila that we 
needed to re-access her port
to keep her safe.

I had to hold her down
while the nurses worked
to re-access her port.
But it didn't work.
The first needle 
wouldn't go in.
They went to get 
another needle.
The whole time I was 
talking to Lila about
Halloween and
with a really calm voice
but inside I felt
like I was going
to hyperventilate.
I was praying so hard.
Please, God.
Please let this work.

It worked.
I asked them if
this happened often
and they both said no.
I asked if this
meant there was
a problem with Lila's port
or if this was just a fluke.
They both thought
it was just a fluke.
I certainly hope 
they are right.


  1. And now I'm crying. So hard to understand why she has to go through even more. Praying you get answers and that they are the right answers.

  2. Our son that had a port has hypergammaglobin animea. his port aslo did the samething twice they had to remove it and place a new one on the other side it was so scarey to see this happen to our little man

  3. Oh no! How terrifying! I am praying that it is just a fluke.