Monday, December 7, 2009


Things are starting to look up a little after we had a bad day yesterday. Jacob woke up with a high fever yesterday, and after blood work and a chest x-ray it was clear that Jacob has his second pneumonia during this hospital stay. Jacob didn't feel great, but worse was that the diet couldn't be started. They don't want anyone to fast when you have an infection. The worry is dehydration.
We had heard that the keto diet only can start on Sundays...The thought of having to stay another week to simply wait for the next Sunday didn't brighten up our day. Jacob's neurologist called me in the evening, and told me that she had already talked to the keto epileptologist to see if they could make an exception for Jacob and start his diet this week, but it all depended if they could have staff available the following weekend or not.
Today, we found out that both Dr. E & Dr. C have been pushing to start Jacob's diet tonight! Hopefully he has his last formula at midnight tonight, and we're on to the road of keto diet! I took this week completely off from work, since I have heard that Jacob likely will be nauseated, might vomit, and be constipated as he starts the diet. I want to be completely there for him without the laptop in my lap. We're so, so hoping that the keto diet will work for Jacob. I feel that this is sort of Jacob's last hope to a more seizure free life. Let him be one of the 2/3 of patients who see results.
Today was a good day. Sarah shone up when she realized she would spend the day with her brother. The bigger smile came from Jacob when he realized who came to visit!!! He simply couldn't stop talking, and I didn't see a single seizure for 3,5 hours! It was also fascinating to see how extremely well Sarah deals with Jacob. She is not the slightest afraid of Jacob seizing. His left side of the face was starting to twitch towards the end of her visit. She simply talked to him, and caressed his cheek to bring him back. I was truly amazed with how natural she is with him. I am wondering what these experiences will bring her one day.
Sarah was reading books to Jacob, they watched The Elf together, made Christmas ornaments for Jacob's little tree, and Sarah tried out all the snacks in the hospital kitchen from crackers to jello!
Sarah also helped Jacob get a bath. She loved to help us out with the bath, but really started to complain about Jacob's overdue haircut - "mommy, you do need to shave Jacob's head soon!"
After exactly 40 days in the hospital, I can only say that having both kids together in the same room was the best gift I could have gotten. We were all simply beaming as we went through the day, and I felt more hopeful about Jacob than I have done in a very long time. All his doctors and nurses simply smiled as they saw us together today.
Jacob's nursing company is starting to gear up for Jacob to come home. We will bump up our night nursing to 5 nights per week, so we don't worry about Jacob seizing as we go to sleep. We will also have a day nurse 3 days a week. With Jacob seizing throughout the day, we can never leave him alone, so we will need a little bit more help in this area than we needed before.
I also once again was embraced by so much generosity today. A colleague and friend wanting to donate a catered buffet dinner to us to enjoy with friends or the hospital staff. Sunny from Jacob's school stopping by with dinner and the cutest slippers for Sarah. Whitney, Jacob's nurse, just being who she is.
Tonight, I see the light at the end of the tunnel, and hoping that we get to bring Jacob home some time this weekend. Swedish Lucia is on Sunday.
Blessings, Maria.

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