I've been trying to not get angry. I'm not angry anymore but when I wake up and see my boy's sad face. I feel the disappointment and I feel the need to express myself.
Communication is crucial in every aspect of life. And when it comes to issues that involve us and our children emotionally; communication is even more vital.
I was given the okay to make the appointment to have Lota’s port/central line removed by one of Lota’s care team. Lota was very excited and was looking forward to that day (yesterday). Four days before surgery, I was told that the other half of the team felt we should keep the port in until our next MRI. The reasons presented were very good reasons. My question is, Why was I given the okay to make the appointment and get my boy all excited when half the team was not notify on this decision. I thought when they say this is your “care team” they are to communicate before they inform us parents on what to do.
We now understand why Lota has to keep his port in. But if communication was done the way it was suppose to be, Lota would never have the knowledge that his port was going to be removed and now he is here wondering whether he will end up needing chemo anyways and whether we think the tumor is coming back. Yes, those are all possibilities but when working with children this should be an emotional roller coaster a medical care team should already know how to avoid. These are hard questions for a parent to answer, let alone a child with a personality like Lota to try to understand. These are questions that are pulling at my heart.
I am so grateful to know that there is a God out there that I can run to when I feel helpless. Please include Lota and our family in your prayers today.
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