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One year has passed by since my daughter's surgery and her surgical scars have now healed well. What the surgeon had set to achieve has worked. She is now out of immediate danger and the highest level of pain has been removed. As you may have noticed with your own pain, when you remove one, another layer of pain that could not 'speak loud enough before' may then surface. This is what is happening now. Now that the pain linked to the collapse of the titanium mesh on the cerebellum has been addressed, problems of intercranial instability and other sources of discomforts, that would require a different kind of surgery or intervention, still need to be investigated. In other words, the neurosurgical aspect has not yet been fully investigated. Her US surgeon has contacted Josie's Sydney team to conduct these tests for him. At this stage, we do not envisage any other surgery but the findings would be helpful for her pain management.
Everyday life is now stressed further by the lack of financial resources with no prospects of improvements, and a smaller house, which also limits my prospects of welcoming friends in guestrooms. Yet, doing this surgery was paramount, so I have no regret.
However, the hardest is dealing with 'compassion fatigue', especially coming from Emergency Services. We are simply no longer welcome there.
I have already spoken about that. We have now tried four hospital with the exact same result: delayed, sometimes inadequate (common headache medicine) or insufficient pain treatment not following the specialists' protocol. Each time, you never know what will happen. One day, she is rudely discharged too early without adequate treatment and I find her unconscious in front of the hospital (that was when I was not allowed to get in because of covid), and another time, there has been discussions of keeping her unconscious under observation in a minimal supervision area overnight with insufficient pain relief. Luckily, on that occasion, she woke up, was able to dismiss herself and I almost carried her to the car. The problem is what is in store for 'next time' and there is no way I can let a support worker or anyone not well versed into her case manage such situations.
This year, however, I finally lodged a number of formal complaints since I know that we are now in for the long term, both at local (Hospital Patient Liaison) and state level (Queensland Health), and as we speak, the specialists are trying to intervene at the highest level of our catchment hospital (RBWH) to have them implement the specialist's emergency protocol systematically on presentation. It did not come to anything substantial so far beside a meaningless apology not followed by actions. I sadly guessed it would be the case after my experience with the heavily outdated judicial system during the divorce, but I had to go through this process of seeking justice to a reasonable level in order to live with myself, whatever the outcome would be.
The bottom line is that the Qld Health Ombudsman admitted she did not have medical knowledge but was only acting as a mediator. The second point is that each emergency service does reserve themselves the right 'not to follow specialists' instructions since they are ultimately responsible if something goes wrong. They have their own rules and procedures. Emergency services handle cases in a standardised manner that only belongs to them, for large numbers.
This highly impersonal system does not suit patient with rare conditions. The management dispensing the authorisation to use such or such drug will let a patient in excruciating pain rather than not stick to standardised protocols inappropriate for rare conditions. This is a nightmare for any chance of long term pain management success. I am also fully aware that there are limits to pursuing justice because there is a point, in these lengthy and expensive processes, when more harm than good is caused even if you are right. Sometimes, I think people in the future will look at this time of 'optimum processes for masses' and think how barbaric we were.
It is complicated, a lot of forces at at play, including the fact that women's 'aches' are not taken as seriously as men's, and the fact that the drug prescribed as part of her protocol is still controversial (ketamine). On the latter, I invite you to see the documentary 'Take care of Maya' (2023) on Netflix, which depicts the dealings of a family whose young daughter required unusual doses of ketamine due to her rare condition with the US Emergency system and how the system (including social workers, hospital in-house generalist experts) took over to the point of withholding all parents rights to an assertive mother and without listening to her discipline expert specialists who were more versed into her rare condition and who had followed her more closely and for longer.
...
Socially, life is shrinking as well, since continuing this kind of walk is beyond difficult, so this was to be expected.
I suspended my Facebook account. I went from 100 to 50 friends since 2015 - I did not meet many new people since Josie got sick, understandably. I have very little time to myself; one support worker on Thursdays only and he still needs to call me in case if emergency or when very potent medicines we'd to be dispensed since he would not be allowed to dispense them himself. Add covid to the mix...
I had the impression I was giving news from the Ukrainian war to people I am not sure I really knew anymore, who were just watching ...
It is not just others, it is also myself, I have become more discerning. "I think there is a point in your healing journey where you stop trying to convince other people to do the right thing, you just observe their choices, understand their character, and decide what you are going to allow in your life." B. Weist, 2021.
As mentioned in my last post, the last six months would be spent healing for both of us, and this is what we did. We have constructed a conducive environment in our little sustainable house in order to, at least, find the force within.
