Posts Tagged ‘gamma interferon’
The last two days have been long and stagnant.
Not a lot has changed for the girl and her abscess problems.
She still has pain to the touch and she is still unwell
and there has been a lot of sitting and waiting for something to happen.
Dave calls it the sit, sit, staaaaaaaay phenomena,
whereby the doctors make you come to them and then tell you to wait.
Wait for them to grace us with their presence,
wait for the illness to declare itself
wait for something
but if you do and you are patient then like a good dog, you shall get your
meaty treat at the end.
We received the call late on Wednesday afternoon
that we were to present to the children’s hospital,
back to the parent care unit.
We thought for needle aspiration and treatment of the abscesses.
I admit to having a full meltdown and yelling incoherently
at Dave about not wanting to go and not knowing what to expect
and that I fully believed that I would take Ivy there
only to be treated poorly and hurt.
I’m sure I accused certain doctors of not thinking anything through.
I remember blathering something in a teary tirade about
how they didn’t know her, *really* know her
and that she wouldn’t cope without pain relief if they had to stick
any kind of needle into her
and had anyone bothered to tell them that.
Did they know about the midazolam rule?
I think David calmly told me that it was actually a hospital that we were
going to and most hospitals knew about midazolam.
I have no excuses for my bad behaviour
except that seven weeks in a health institution can send you quite mad
if you let it.
When we arrived we met the country liason nurse and then we met
with the child life therapist, who had received a letter
from the play therapist from our hospital
with strict instructions to look after Ivy.
I love our hospital.
I love the people who work in it.
I love that even from over 200kms away, they are pulling for the small girl.
After we were admitted to our room we met with the immunologist
and after that there was nothing for the rest of the day
and not much today either
That’s why it’s been long.
The thing is the immunologist hit us with news straight up.
A specialised blood test that was done in February
had come back positive for a specific mutation
of an immunological pathway (IkBa/NFkB)
and while that doesn’t mean a lot to any of us
(aside from a wicked headache as I try to read the literature available to me)
for Ivy it means a definitive, “put your finger on it” diagnosis,
new interest from the doctor because it is ‘quite rare’
and that allows Ivy to be approved for a new medication
called Gamma Interferon.
I don’t know a lot about Interferon yet
but I do know that it will help with fighting infection
from a macrophage point of view.
Macrophages are cells that come in and mop up infection,
which Ivy’s don’t do.
The girl has lazy cleaners apparently
and this injection that she will now have three times a week
will whip those macrophages into shape.
She had her first injection today.
She was so very brave.
On top of that the doctor has finally approved Ivy
for subcutaneous immunoglobulin.
This is a major thing, my friends.
It means we don’t have to find a vein every three weeks for cannulation.
It means that she will have a pump at home,
a small butterfly needle under the skin
and an infusion once a week
and, okay it will be more frequently
but the good thing is that she could go to school,
come home in the afternoon,
be hooked up to her pump for a couple of hours and watch a DVD,
play with the sisters or Noah,
have a snack and essentially have a normal life.
It’s a good lifestyle move for the girl
and it will keep her out of the hospital more.
At least that’s our hope.
We are still waiting for movement on the abscess front
but at least we are making progress in other areas
and that is our reward for being patient.
No pun intended of course.
Addit; We’ve been given gate leave until Sunday afternoon, when we will return for theatre to have the abscesses drained again.
The girl is so very tired and feeling far from herself but we are glad for the opportunity to be home.
We are thankful for it.