Today was a very disappointing day.

When Ivy’s Hickman’s line was removed I was okay with it.

Happy, in fact.

We had been in discussion with the immunologist about Ivy being able to trial subcutaneous immunoglobulin -

which is basically the same medication as the IVIG

just in a more concentrated dose

and it would be delivered by a small needle just under the skin on a  twice weekly basis

rather than having it intravenously every three weeks.

I was keen on the idea because it meant Ivy could have the infusions at home,

in the evenings

and we could miss less of everything

and keep Ivy out of the hospital for a while.

The immunologist seemed to be very happy to give it a go too

and so I thought that peripheral access would be limited to one, maybe two cycles of the IVIG, while things were organised.

Then we would start with the subcut.

At least, that’s what we were led to believe.

Ivy hasn’t had the best health since then, it’s true

so the immunologist pushed it back a month

and then another.

She didn’t want to overwhelm Ivy’s system.

She felt Ivy needed more time.

She wanted to give the lactoferrin time to work (the lactoferrin is a whole other issue which needs a post of its own, really)

and so every three weeks, I have taken Ivy into the hospital for her infusion.

It’s been okay.

The paed prescribed midazolam to relax the girl (which it does very well)

and cannulation has gone fairly smoothly.

The needle has found the vein first time,

most of the time.

Last infusion we blew a vein – it was her best one

but the doctor found a second vein easily in the other arm.

There’s no point even trying to get a cannula into the veins in her hands any more.

Even though the doctors pat at them and think they may be viable.

There really isn’t any point.

They’re just too scarred.

Last week’s IVIG was supposed to be the last one and then we were going to travel down to Sydney for three days at the children’s hospital,

to learn the ins and outs of subcutaneous IG.

Except now – today,

it’s been pushed back again – for another two cycles, in fact

before the immunologist with review that option

and I am disappointed.

For Ivy, yes

but for all of us too -

I was looking forward to the ‘freedom’ it would give Ivy

and our family.

The immunologist says that Ivy is not stable enough to trial the subcutaneous.

She’s using the small girl’s limpy leg now as her reason to deny.

It’s okay.

I can understand where she is coming from -

there are only about twelve children on the trial

and the immunologist has been very selective as to who is approved

to ensure a high success rate

so that the trial will continue to be supported,

which will in turn allow more people with immune deficiency to be able to access the subcut form of immunogobulin

and I guess, Ivy is too much of a risk, right now.

If Ivy were to be put on the program, and not do well, that would throw the success rate out.

I get it.

I’m still sad that there will be at least two more cannulations in Ivy’s future

and I’m willing to bet more.

I’m pretty sure that next month will be a bust too

and then we will be into the new year.

The immunologist suggested that the growth hormone (which has been in the works for well over a year)

would also be an issue for her and would delay things for the girl.

Which brings me to a crossroads.

Which is the more important issue?

Ivy’s growth and bones are in trouble – she is osteopenic and her bone age is 2 – 3 years, when she is almost six.

She’s on calcium and vitamin D but still, she’s struggling.

I can’t imagine how bad a broken bone would be for her, right now.

There has been no promise that the HGH will be approved any time soon, although I live in hope

so,

do I push on with IV access on the off chance that she will get it

but then

what happens if we blow all access peripherally?

I know that we are okay at the moment but what happens if her veins can’t take any more.

Will we then be pushed into having to consider central line access again?

That would be a nightmare.

The subcutaneous Ig would take that issue away.

I feel stuck and sad that we are not moving forward on this.

Yes, today was disappointing indeed.