11/30 - PM Update - "Palliative" care

Oh man - I am tired. I cannot think anymore.

Every SMA family MUST deal with the topic of "palliative" care. Websters.com says: "serving to palliate" -- not very helpful. Oh wait -- futher down it says: "Relieving or soothing the symptoms of a disease or disorder without effecting a cure." But, Medterms.com had the best explanation, I think. "1) Medical or comfort care that reduces the severity of a disease or slows its progress rather than providing a cure. For incurable diseases, in cases where the cure is not recommended due to other health concerns, and when the patient does not wish to pursue a cure, palliative care becomes the focus of treatment. For example, if surgery cannot be performed to remove a tumor, radiation treatment might be tried to reduce its rate of growth, and pain management could help the patient manage physical symptoms."

We chose to put Emily through her G-tube/Nissan surgery a year ago b/c we saw saw an opportunity to give her a longer life of good quality in a way that is more manageable for us. I have said it many times, we are not trying to "beat" SMA or make her live longer that she wants to, but with the palliative definition in mind, we have chosen to use the Cough Assist, BiPAP, suctioning, etc. as respiratory aids, to lengthen her life in a palliative manner. However, as we become more familiar with the minds of healthcare providers, we are learning that the term Palliative does not mean the same thing to everyone. Even among the teams that we are dealing with here in the PICU there are obvious differences about palliative care. I think of it in reference to time. Some of us feel a sooner death is better, others believe the opposite. We believe that good care can extend Emily's life without degrading the quality of it. We are trying to address the acute issues (e.g. Pneumonia) in a way that sets us up for the chronic issues. If we don't wean Emily off the BiPAP correctly, everything else is going to suffer. However, if we can wean her in the most effective way we will all be more prepared to deal with the ongoing care.

I write these things b/c they are constantly on our mind. We are trying to make the best decisions for Emily and dealing with the different medical personalities makes this a challenge b/c of nuances in understanding like I mentioned above. That being said, we had a good conversation with Pulmonary today. They seemed to think as we do about Emily's respiratory condition and we are going to make some aggressive changes to her care b/c it will, hopefully, set her up for more manageable and healhty care once we get home.

Thanks for reading. Peace <><