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

trick-or-treating 

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.