This is a supplemental blog to respond to what's been happening with Maddy's care over the last few days. Let me start by saying I did not intend to say that Maddy has been getting poor treatment this visit. It's just that not everyone seems on their "A" game this time around. Including me! I don't know if it's because they are understaffed, overworked, or just extra busy because it's flu season. I must also say that I am very grateful to all those who choose to care for others as health care professionals at every level from trained technicians to doctors. I have to live with and help a chronically ill person but they choose to help chronically ill people every day. I also want to say that Tampa General Hospital overall does a great job treating Maddy every time she is here.
That being said I must also make a case for the family of a person who is sick. Whether it be a chronic illness, like my children have, or a sudden sickness that must be treated in a professional setting. You are the only advocate that person has when they are not at their best and need someone to watch over them. In our case, most of the time, both Madelyne and Ethan know exactlly what to watch out for and how to advocate for themselves. However when a person is sick they need someone there to advocate for them.
I don't know what it is about this visit but it seems everything that can go wrong with Maddy's treatment has gone wrong. Some things I have been able to catch before they got weird and some things I have not. Some confrontations with staff over these incidents have been very easy and others have been very trying. Some things are controllable and some things are out of our control. The important thing to remember is that we must all be on the same team. I have to gently remind myself that often, and remember it when approaching hospital staff about issues. No ones perfect, least of all me, so we must take a deep breath and work through it all.
One of my frustrations, that is beyond my control, is the treatment schedule they have Maddy on this time around. How can someone expect to get better while fighting a virus if they are kept awake with treatments all night long? This time around the treatment schedule is beyond our control due to the overcrowding of the hospital when Maddy was admitted. It's no ones fault, but sometimes we feel like the system treats people like machines they can just plug things into when ever it's convienient. I have spent enough time in hospitals to tell you that it's easy to see the paitent as an object instead of as a person with needs. It's the advocates job to point these issues out to staff so that our loved ones are treated like human beings and not objects. In past experiences with bad treatment schedules we have been able to work with the doctors and staff to adjust the clock and make things work more smoothly to allow for proper rest at night. This visit has not been one of those. Again it's no ones fault. Yet it is still frustrating, especially for Maddy.
Much of this blog entry turned out to be a venting session. But I hope everyone can see that I have nothing but respect and admiration for the hospital staff. Yes, this has been a frustrating visit. But I am confident that everyone is trying their best to make sure Maddy gets the best treatment possible. We have just not been on our "A Game".
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