After the crazy Sunday, we had an uneventful Monday. Jacob was completely sedated from all the medications he got on Sunday night. He didn't want to open his eyes. The only thing he wanted to do was to sleep. He was exhausted. It worried me of course. This is not like my boy. He can take any medication, and perks right up again. Well, this time he got a dose 7 times (!) his regular dose on top of his whole seizure action plan and Versed. Never has the number 91 made me so happy, but that was his level of the seizure medication phenobarbital in his blood. Jacob likes it to be in the 60s. That Jacob would be sleepy with a level of 91 made sense. I was told by the neurology team that you and I would sleep for a week with the help of a breathing tube, if we had that medication level in our blood. We were to expect that it could take Jacob days to get his medication level back down. We were told that we would have a sleepy boy for days.
To our surprise, Jacob's liver worked extra hard yesterday, and spit out all that phenobarbital. This morning, his level was in the high 60s! Dr. C. has referred to Jacob's liver as a turbo liver in the past. That is why he in many cases needs higher doses of medications than most patients. His liver just metabolizes meds differently than most people. The neurology team didn't believe their eyes. It was a first for them.
Unfortunately, Jacob continued to be sleepy today. I was told by the team that this was to be expected due to the prolonged seizure and all the medications. I have to admit that I very much dislike having my boy be sedated. It is just not a good place to be. I know that I am extremely impatient, and talked myself into believing and trusting the neurology team. Things were also progressing in the right direction, we were moved out of the PICU up to the regular floor. The plan was to let us go home tomorrow Wednesday.
That was until Dr. C. saw Jacob tonight. She was the first to express concerns about his sleepiness. She would not expect him to be that sleepy considering how his liver is processing medications. She also couldn't put a finger on why he had gone into status and why he has had multiple seizures last week. Dr. C. wants to do a brain MRI or CT scan tomorrow, if Jacob continues to be sleepy. This is not a big deal for most kids. Sedation is one thing everyone involved in Jacob's care wants to avoid to any cost. It is something that is only left for an emergency situation. We have discussed it so many times with Dr. C., so that she is requesting an MRI or CT scan means she is worried. She is thinking that he might possibly have had a mitochondrial stroke. The word brings up so many memories from 3 years ago when we thought we would loose our boy to seizures. Has his disease progressed again? Did something happen in his brain last week or on Sunday? Why is he not acting himself? I so remember the last time Dr. C. brought up a mitochondrial stroke. I can see her telling me this as we are both standing at the end of Jacob's hospital bed up on the 8th floor. My Spanish work team was in town, and they all so wanted to get together. Sarah and I came home late from the hospital, and had an impromptu wine & cheese evening with them in our house. I remember telling them about this possibility, and it being a too big word to wrap our heads around.
Tonight feels the same. It feels as we're going in the wrong direction with Jacob. I can't believe that just a few days ago we were painting pumpkins and visiting the pumpkin patch. Tomorrow, we will know if he has had a mitochondrial stroke in the last days.
So once again, please send Jacob positive thoughts and prayers. He needs them all as we will find out more about his brain tomorrow.
Much love,
Maria.
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