Wednesday, December 16, 2009


Today is a better day. We're up on the 8th floor, and that in itself is just so much better for all of us. We love the nurses up here, and we know the attending doctor so well. It was such a nice warm welcoming as we got up here yesterday afternoon.
Jacob has struggled with seizures today. The afternoon has been long with Jacob having seizure after seizure, and not responding to the medications.
We ended up having our care conference with Dr. E. already yesterday. It was so nice to realize that we don't have to make up our minds regarding everything right now, and that she has full confidence in us making the right decisions at the right time. That we have this close relationship with her will also make this journey easier. She is constant in our changing world.
We have also talked to the Butterfly program again. There is not a lot actually changing right now on that front either. We'll have them meet with our nurses at home, so the two teams can coordinate care.
A date to let us go home is also discussed. We're hoping in time for Christmas. Monday might be a possibility, but as the doctor said today: "Jacob will decide."
It does feel a bit like going down memory lane these days. Different but familiar. My mom passed away pretty exact 20 years ago in skin cancer (malignt melanom). We knew when we moved from the stage of treatments to knowing that her cancer had spread to the liver, lungs and brain. Suddenly, death was so much closer. I remember taking a leave of absence, so I could be in the hospital with her every day. I remember living in the unknown, living on limited time. You sort of start your grieving already in that phase. It's different than after death, but it's still there. I am fearing the raw deep pain that can only happen when you're loosing someone very close to you. It sort of fills you up. It doesn't leave room for much else.
But for now, we're hoping for a quiet night on the 8th floor with Jacob stopping his frequent seizures.
Love, Maria.

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