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Reese’s Story

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Latest Journal Update

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"An oximeter can only tell us numbers, but he's a boy, so we have to look at him to tell us if interventions are working" THIS is why I love our palliative care doctor, Dr. F. We had a fabulous appointment yesterday and I am feeling so much better about so many things. I don't like where we are. R continues to throw new things at us. I do best if I have a plan and we have some new plans. All our other physicians want to fix things, that is their job, but there are many things we can't fix and figuring out a way to make R handle those unfixables better is the goal of our palliative care team. We value and love all our docs, but in the situation we are in right now Dr. F's approach is so appreciated. We can not fix that his large intestine is not working as efficiently, that is a part of the progression of his disease, but there are things we can do to help it work better. We can not fix what his lungs are doing at night and how his breathing oxygenates his body, but we can try our equipment and watch him to see if that is working better. Talking about things in that way gives us some power back. Rather than saying, "his oxygen is low at night, we need to do this," we will say "his oxygen is low at night, let's try this and see if he's better with this equipment. If not, we'll not use it. If so, we will." A very small difference, but gives us some control back so each decision is one based upon what R needs. Dr. F helps us focus on R, not mito and I LOVE that because when things are so inconsistent, mito often takes center stage.  
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Comments

4 Comments

Marilyn Harju
By Marilyn Harju
G.G. Sounds like you have a good plan in mind now! Glad to hear that! Sorry I didn't get to talk with you this weekend! Hopefully next weekend! Love & God's Peace, Jorj
Leann Lind
By
Sounds like you have a wonderful, caring doctor.
Love yous! God's Peace,
Leann
Kim Madill
By Kim Madill
Thinking of you always my tough mudder!
Angie Forsberg
By Angie Forsberg
I am so glad to hear that this doctor has been able to help with this approach to take back some control and focus on Reese. Sending much love to both you and Scott.
God's Peace.