EEG, MRI, Eye exam and Baptism

Day 38 - Hospital Stay
Day 33 - Intubated

Logan's sodium level is back at a good 134, down from 127 at his worst. They will continue to monitor his sodium level. They will giving him even more concentrated formula at 26 cal, and maybe some diuretics to lose the excess water. His urine output was good, as well as his dirty diapers. Today is his last day of antibiotics, so hopefully, the diarrhea will stop soon. But do we want it to stop, since it helps getting rid of more water? At least his little bottom won't turn red again.

I have requested to speak to a Catholic priest. I have not been the best Catholic in recent years. However, I need some guidance. I want Logan to be baptized. Maybe a miracle will happen after he's baptized, or it might give him and us some peace.

We will have our big meeting with the Geneticists, Intensivists, Neurologist and other specialists tomorrow at 3:30 p.m. This is it. The big one. This will be the worst meeting of my life.

10:30 a.m. - Logan is down at MRI at the moment. Logan opened his eyes during transport and was moving a bit. Maybe he knows something is going on? I was chatting with the Chief earlier, when she was accompanying Logan to the MRI room and getting him set-up. She just talked to the neurologist regarding the EEG result. I knew it's going to be bad news. The result was a lot worse than the one he had a month ago. He is showing some seizure-like activities, and he's not very responsive. His waves are basically all over the place. The Chief said we might actually see him seize in the near future. Because of Leigh's disease, anti-seizure medication is probably not going to help. I do NOT want to see Logan seize. I just want to see him calmly sleeping.

11:10 a.m. - I just heard that Logan will be back up soon. I already know the MRI will show more strokes and more damages to his brain. I can't imagine how one month can change everything.

11:20 a.m.- Neurologist stopped by, basically confirming what the Chief said. He asked me what I want to do in case of giving Logan anti-seizure medication. He said he won't base a treatment solely on the result of the EEG, but on Logan overall as being Logan. I told him I just want Logan to be comfortable. I asked him how responsive is Logan in regards to me touching him. He explained Logan is like having a flu, he might respond but because he's so sick, it might not be the appropriate response that we're looking for. The EEG technician tickled Logan's chin and toes yesterday during the EEG, but did not see much brain activities going on.

11:45 a.m. - Logan is back and has his eyes open. I just talked to a priest. He will come and baptize Logan at 4 p.m. and will talk to me about what I should do. I hate to be one of those people who turn to God whenever there's a crisis. But I really don't know what to do.

1:00 p.m. - Just talked to the Opthamalogist regarding the findings of the eye exam. As expected, things have gotten worse. In the past exam, it was noted that Logan had a cherry red spot, but he was still able to see light and transmit it to the brain. The cherry red spot is not red any more. Blood hasn't been transported through the blood vessel, and the spot has become blanched. The layers that is in the retina are slowly become smaller, as well as the blood vessels. Signal of the light no longer transmits to the brain. He said in a few weeks, there may not be enough blood to flow through the optic nerve to the brain. I guess basically, anything that can go wrong, has gone wrong.

2:00 p.m. - Intensivist came in to talk to me and gave me the result of the MRI. There are more strokes in the basal ganglia and the brain stem. It's more and more difficult to be optimistic after test and test prove that there's no light at the end of the tunnel. I would be lying if I say I haven't thought of the unthinkable option of letting him go. I can't decide right now. I don't know if we should continue to be optimistic to give Logan a chance to fight, or to let him rest so that he doesn't have to fight anymore. His respiration rate dropped just now and took a minute or two to bring that back up. Maybe he's getting tired. I don't know what's best for him anymore.