We walked into this appointment blind to what was to come. We had no idea what to expect. To me, palliative care is a confusing specialty. It is not necessarily end of life care. From what I have learned, it is more about symptom and pain management. Hospice tends to be the end of life realm.
We met with a very kind team including a nurse, doctor, and social worker. They gave us a short explanation of palliative care and some of the services offered. We then talked about Logan and his story at length. I was then expecting to talk about Logan's future in more detail but it felt as though much of that was being held back. I felt as though his prognosis was not being said aloud, that we were pretending that his underlying condition was not life limiting.
I was waiting for some blunt, to the point conversations but instead we seemed to be talking around the real topic at hand, Logan's future. We talked about how Joel and I work to make decisions. We talked a little about big sister Lauren. We talked about whether we have spiritual support. There were many questions related to his secretions and constipation.
Still very little talk about Logan's future.
They did say that they are willing to go as far as we would like when it comes to talking about the details and that we could say at any time if we were overwhelmed. We were offered help by the physician to manage any issues that arise medically and the nurse and social worker offered to set up a meeting with our nurses.
We were not able to be offered any home visit nursing services as we are out of the service area. I was pretty perturbed by that. I am not asking for these services at this time as we are doing great and Logan is maintaining good health. But in the future this may be essential especially to our nurses in order to have someone trained in pain and comfort to guide us through.
There was talk of how they could help us in the case of a hospitalization. We could utilize them to help us with decision making. At that point a lot of the conversation went to hospital talk. I finally interjected and said that I want him at home as much as possible.
I turned to feeling frustrated. Don't get me wrong, I am very appreciative of their time and have a great deal of respect for what they do. But in that moment, I was feeling as though this may not be the best fit for our family. I walked away unsure as to what we can draw from this team at this time. There was talk of music therapy and massage therapy. All things we would have to go to the hospital to receive. We live about 45 minutes from the hospital so this is not an ideal option.
All in all, the meeting was a learning experience. At this time, the palliative care team will serve as a resource and in the future may become a more active part of his care. We learned a great deal and had an opportunity to discuss some of the tough stuff.
I walked away frustrated and wanting more information. I think part of the problem I am having is that I need more information regarding his brain degeneration. We have yet to see our neurologist. We see a neurologist at Mayo in two days but I am afraid she may also skirt around the subject. I need to know what degeneration of the basal ganglia really means to Logan and our family. What may we see in his future?
I am going bonkers with worry. When he does something out of his norm I worry. Last night he was staring at me, not blinking. He did not look like my Logan. I freaked out thinking, is this an absent seizure? I am sure he was just tired and maybe forgot who his mother was as I did go away on a trip for four days! Then today, it seemed as if every time I touched him he startled. I am then again thrust into worry. I know it is irrational and truly there is most likely nothing wrong. I think my emotions are in overdrive and causing me to read into everything.
Knowing more about what is really going on in his brain may provide me some comfort. Unfortunately I may not get the answers I am looking for. We are working with a child that still has no diagnosis. He is a mystery and so is his future. This sucks!
So on to Mayo Clinic in two days. Hoping to get more information about his brain, his movement disorder, and maybe some more treatment options for his movements. It is hard to watch him constantly move. He appears uncomfortable and in distress when the movements are in overdrive. It causes an increase of secretions and therefore increase in suctioning which is not comfortable.
I am honestly frustrated right now. I feel in the dark. I feel out of control. Not knowing is a scary place to be. But I am also committed. I want to know more and will seek out my own resources while working with the ones I am given. Logan has many people looking out for his best interests and I am comforted by that.
No comments:
Post a Comment