It has been 4 weeks since the hospital received Nicola's test results. In that time, they haven't bothered to contact us at all, not even to give us the diagnosis.
So how did we find out about this horrible monster invading our precious little one's life?
Nicola was admitted to a different hospital for a scheduled heart procedure. She needed a cardiac catheter and a balloon catheter for her pulmonary stenosis. It was a bit of a hair raising procedure, but when we were sitting in the critical care unit, hours after she had come out of the operating theater, a doctor I had met for all of 5 minutes handed me a piece of paper and told me that my daughter had Costello Syndrome.
That was when he walked away and left me.
It seems that HE had access to the information that I had specifically requested to only be available to my husband and I until we had had some time to work through it emotionally.
I can't even begin to express on how many different levels this toys with my emotions.
I feel hurt that my daughters privacy was violated in this way, especially after we made specific requests as to how the results were to be handled.
I feel frustration that to all outward appearances, the medical staff we have been dealing with for the past 8 months are no more inclined to help now than they have been for the past 8 months...
And I feel anger.
I am angry that we got this diagnosis.
I am angry that they didn't tell me.
I am angry at the way they told me.
I am angry that they have made no effort at all as to her medical care.
In late March they told us that they would schedule Nicola in for a PEG within 4 weeks. We still haven't been given a date.
Two weeks ago I was told that Nicola would be scheduled for a gastro review within two weeks. I rang them today to chase it up again. Apparently it was forgotten.
Our pediatrician advised the staff at the Mater last week that they would schedule an appointment for us for this week.
We have heard nothing.
It seems as though the only way that we get any assistance from them at all is from me fighting and yelling and shouting and threatening and making a scene.
Don't get me wrong, I will continue to do so as long as it is necessary... but I just wish that she could get the proper medical care that she needs, without me having to fight so damn hard for it.
Unfortunately, there is no other hospital around better suited to our needs.
It makes me so sad, it really does.
Nicola is only 8 months old, she is a precious little baby... she shouldn't be going through all of this.
We made the decision today that we want to go to the Costello Conference in San Francisco in July. We think it's something important for us to do. Given that we are the ones that have to fight for Nicola's care, we need to know what to fight for, and that is going to be the best way to find out.
Hopefully this will be the start to making a HUGE difference in her little life!