A STEP CLOSER

Today has been a long day waiting for the seizures to break. It has not yet happened, but at least the EEG starts to look a bit better than before. Jacob has also been breathing on his own all this time, but it looks like the vent is starting to take over. The blood pressure is controlled with medications.
We're now in this race to see, if Jacob seizures will break first or his blood pressure drops first. A race between stopping seizures and his blood pressure level. Who will win tonight? We're so hoping for the win of no more seizures with stabilized blood pressure.
By tomorrow morning, we should know for sure if the seizures stopped. He will then stay in the coma for 48 hours, which could mean thru Friday night or Saturday morning. It will then take a couple of days to slowly take him out of the coma.
I had a long good talk with his neurologist today. Even if we do succeed to stop the seizures, we're not done. We're going to have to figure out the best g-tube seizure medications moving forward, and I know that it will be trial and error that finally will decide the mix of meds. We might also have to live with Jacob having some daily seizures, since stopping seizures completely might drug him up too much. This is a very likely scenario.
We also are facing those bigger questions with Dr. E and Dr. C about Jacob's future and life. How much intervention do we want to do for Jacob? The trache is a big topic again, since Jacob does have aspiration pneumonia again and is on Vancomycin once again. It's not an easy decision, but as long as Jacob interacts with us it's really, really hard to let go. Yesterday afternoon, I was laying in bed with Jacob singing his favorite songs, Jacob vocalizing and smiling in between his seizures. Who can say no to that?
We have also become so resilient living this life with Jacob, willing to live part of our lives in the hospital, and to simply do whatever it takes for our little guy to get through the day. I am not sure there is any other way for us at this point. We will start doing regular care conferences about Jacob's care and future with his primary doctor and neurologist, which will be good for all of us.
I know you all have found your ways to think about Jacob and sending him your hopes and prayers. One thing I personally really like is to lit a candle for Jacob. It's a catholic tradition, but I just think litting a candle gives hope, peace, and strength. If you have a moment tonight or tomorrow, please lit a candle for our little boy. I will do it myself tomorrow night at home, but tonight I have to stick to the blinking lights of his different drips.
Send us some positive light, Maria.