Since we left the hospital on Tuesday September 27, the plan was to have two weekly sodium checked by finger prick and to wean Genique off the steroids (hydrocortisone).
The Wednesday after discharge we went for sodium check and no one contacted us with the result.
No news is good news, right?
Then Friday we went back for bloods and there weren’t any blood forms, meaning we couldn’t do Genique’s blood tests. Clearly someone isn’t doing their job!
On Monday, 3 October, Sylvia decided to call before the drive to the hospital, and guess what…yet again no blood forms!!!!
Sylvia then called the endocrine department to enquire about Genique’s blood and they said they will request her file and that the doctor will contact us later that day.
Tuesday and Wednesday Sylvia called endocrine and all the receptionist said on both occasions was that the message was passed on to the doctor and he will contact her later that day.
It is now 4 weeks after we have been discharged and still no phone call from endocrine doctors…
I do believe that there are doctors out there truly caring for their patients, truth is we don’t experience that right now. Hopefully that will change soon.
Unfortunately our Genique is just another number :(
Sylvia contacted Genique’s neurosurgeon team in Sydney, 20 October, as we had a few concerns about the treatment Genique received.
She raised our concerns and also asked if we were over protective parents or do we have good reason to be concerned?
After the discussion the conclusion was that the treatment she received actually put Genique’s life in danger because they gave her fluids whilst she was on vasopressin and she was alert and had in tact thirst.
The treatment Genique received was actually the cause of her sodium being all over the place and her body did not know how to respond to it.
After a long conversation with the neurosurgeon team we decided that we better get another endocrine doctor who is able to keep an eye on her for the months to come and to monitor her hormone levels and make adjustments accordingly.
We got a referral for a private endocrinologist who we will see in the near future.
So, with no help from the Perth hospital, we consulted our GP about the sodium and stopped the steroids.
Today is almost three weeks without steroids and Genique is already looking so much better. She even attempts a little run every now and again, her walking is getting faster and she is much more alert.
She is more active and does her exercises like galloping (skip), walking on her tippy toes and walking on her heels. All good exercises to get her back to her old self.
I think this was the best thing we could have done for her.
On Friday 21 October Sylvia received a call from a oncology doctor.
They called to inform us that Genique is scheduled for a port removal 8 November(next week) as we won’t be using it in the near future.
They also wanted to check how Genique is doing and how things are progressing with endocrine.
Sylvia explained that there were no contact with endocrine since we left the hospital. This came as a shock for the oncology doctor and repeatedly said that it was unbelievable.
The oncology doctor assured Sylvia that they will call endocrine personally to find out what was going on.
Of course we are still waiting for that feedback too…
Hospital life is so frustrating!
Ruan & Sylvia
(PS: I wonder how many other people share our experience, or maybe there are people out there that can share some good experiences - we sure do need those.)