Tuesday, December 1, 2009


Yesterday, we heard the words going home for the first time in a month. It's definitely not immediate, but at least it's out there now. The words have been spoken! In the hospital world, it's probably the most welcoming words you can imagine. The hope of getting back to a normal life again.
This week, we feel very well taken care of. Dr. E. is the attending doctor on the floor. Dr. C. is the attending neurologist. We don't have to repeat his history or explain certain behaviors we suddenly see in Jacob. We're just all on the same page. So nice!
Yesterday, further changes were made to his medications. We're definitely in fine-tuning mode trying to maximize his seizure protection as best as we can knowing it's not going to be 100%. We start to see a pattern where Jacob is worse in the mornings and evenings - a couple of hours before his medications are due.
We're also starting to plan for the ketogenic diet. Everybody told us that we would start this morning...until we found out that the ketogenic team only starts the diet on Sundays and the next available time for Jacob to join the program would be December 13th! That was not what we had expected after having leisurely talked about it for a week now thinking we could start any day! I am not sure how it all worked out, but now we'll start this coming Sunday instead.
It's quite a process to get started on the ketogenic diet. Lots of blood work need to be done before any diet can start. Jacob's medications need to be shifted to tablet form for less amounts of carbohydrates. We also got a thick book and lots of handouts to read through. I am still kind of relaxed about this diet, since we'll be in the hospital for the first week (which is the case for all patients starting on the diet).
The good news is that 2/3 of all patients respond to this diet and will see less frequency in seizures. 10% of them become seizure free. We're so ready to try something else than yet a medication! Hope is here.
Yesterday was a good day for Jacob, Valerie came to the hospital and did music therapy with him. We'll also start up some other therapies in the hospital this week. Jacob also got a real bath for the first time in a month! They also had free chair massages for parents, so Joakim and I enjoyed that part.
Today, 15 FBI agents came in and sang Christmas songs for Jacob! Quite a scene. Sarah also seems to be doing better after having had a long holiday weekend to relax a bit more. It's also nice to see some of her friendships develop as she sees some of her little friends quite a bit these days.
Tomorrow, we have Jacob's care conference. The big next step is the ketogenic diet. It will still be good to get us all in a room and discuss Jacob's long-term plan, and hopefully an approximate date for going home...I am hoping we will be home by our Swedish holiday Lucia (12/13), but as you all know - Jacob is the boss around here!
Take care, Maria.

No comments:

Post a Comment