SOME ANSWERS TONIGHT

Life can be pretty intense in the ICU. Especially when you have a DNR in place. The ICU team is there to save lives to any extent, we only want them to stabilize Jacob so he can go home as soon as possible again and enjoy his life - now - not tomorrow. To talk about Jacob's goals and care in the hospital is hard. With way too little sleep in my body, I found myself tearing up as I talked to the neurologist about my worry about an intubation if they start him on Versed. This neurologist is close to our hearts, so she ensured me that she understood and would advocate for our goals. It's just very draining to have to go there with your son, not only once, but several times, in the last couple of weeks.
We feel we have some answers tonight. Jacob is sick. He is running a high fever tonight, so something is going on. That makes both Joakim and I feel a bit better considering that Jacob had 5 longer seizures yesterday (2 having him going into status epilepticus), and 2 today (one getting him into status).
The doctors agree that we should start taking down Jacob's amino acid. We made a huge increase in his amino acid last month to get his protein level up. We think that it's now messing with his system, and spits out his medications too fast. This means that we will have a more "puffy" Jacob again, but we rather take that than seizures.
We also are fine tuning his medications once again. We see what comes out of that as well.
I was happy I made it to Sarah's choir concert tonight as well as saying a final good-bye to our dear friends who are moving out of States this week-end. I needed that final hug, Jac!
It was also so nice to just sit and listen to live Christmas music for an hour. I was also proud of our little girl tonight! I then went outside to throw out Jacob's dirty diapers, and just stopped myself in my busy tracks. Big snow flakes were coming down! I have been so happy about the mild winter so far, but felt it was something magic in the air tonight, and found some peace and hope in the middle of all the stress we're going through once again.
I am SO thankful to everyone's encouraging words and reminding me of our miracle man and strong fighter as I sort of get pessimistic in the hospital world. If Jacob does ok tonight, we will go up to the regular floor tomorrow, and possibly home on Saturday. In time for Christmas parties and the Nutcrackers!
Much love,
Maria.
P.S. Check out the new pictures from earlier this week when Jacob was home.