THE PLAN

In the middle of chaos you need a plan. You need something that can guide you. It is ok if the plan changes, but to not have something that tells you what are the next steps are is even worse. Yesterday, we were going between the extremes of possibly sending us home with a very sedated boy to admitting him to the PICU and more aggressively treat his seizures. I think as much as both Joakim and I didn't want Jacob to be on continuous IV seizure medications and a continuous EEG, we knew it had to be done. We also knew it was time for a care conference, a time when all the doctors involved sit down and decide on next steps. What we have also learned is that when care is straight-forward, there is no need for a care conference. It is when things are getting complicated and not so easy any longer that that care conference gets scheduled.

As the care conference came closer, both Joakim and I started to tense up a little bit. Anyone who has any idea of how reading an EEG would know that Jacob's EEG is very abnormal right now. There is no doubt that Jacob is seizing at all times. And as we were getting closer to the care conference, we also started to see clinical seizures as well. Due to the amount of seizures Jacob lives with, we have only treated clinical seizures in the last three years. We know that there is no chance to get Jacob to a complete seizure free place.

Dr. C. was leading the care conference. She thinks that Jacob's mitochondrial disease is getting worse. She said that often it happens sudden like it did in Jacob three weeks ago. One day he has a big seizure, and after that things start to go downhill. She thinks that we might not get to a place where we can control all his clinical seizures any longer. That we might have to let some of them simply happen. It is that delicate balance about finding the best quality of life for Jacob. Is Jacob better having some seizures or being drugged up every day? It is a hard choice, since Jacob is not doing too well with these new seizures. It is hard for him to do much of any activity as he is seizing unfortunately.

We talked about going up on his medications, possibly adding a new medication, or we could try something "crazy" like IVIG (intravenous immunoglubolin). Dr. C. has seen IVIG give some kids with uncontrolled seizures that magic "seizure control" again. Since we feel that we haven't seen the greatest results going up on medications lately, we all jumped on trying IVIG. He has just been weaned off Versed, and they will start IVIG shortly. We are hoping and praying that this would be that magic thing for our boy when nothing else seems to be working. It is a 2-days infusion, so Thursday afternoon/evening, we should know if Jacob is doing better. It makes me a little scared too. We were hoping that the ketogenic diet would be that magic thing for Jacob three years ago, and instead he almost died when he entered ketosis. We're entering new territority.

If the IVIG doesn't work, we will still try to go up on some of Jacob's seizure medications that we know he is responding to. We will give it a try.

To spice things up, Jacob is also running a high fever this afternoon. We noticed that his heart rate was elevated, and sure enough he has been fighting a high fever for hours now. They are starting Jacob on 2 IV antibiotics. His breathing also got obstructive on the IV seizure medication, so he is now using bi-pap to breathe. So, lots of things happening at the same time.

Tonight, I feel that I am back in a too familiar place. It is a place that we're dreading to be back in. A place of little hope, and difficult decisions. A place where Jacob's quality of life is at the forefront of any decision. Discussions and decisions that are full of emotions, since this is not just another kid. This is about our Jacob. And as the doctors play their roles of science and medicine, we counter balance them with the love we have for our boy, and hoping, praying that we can get Jacob to a place where he can enjoy his days again, and we can take him home.

Much love, Maria.