In my last post I mentioned Eli was having some shaking or tremors. After I posted, they got worse. Worse enough to warrant administration of Ativan (an anitconvulsant). It helped and he rested some but they came back. Again, Ativan helped, but by then the doc wasn't convinced it was just because of the anesthesia. Also, it wasn't an all over the body kind of shaking, it was more involved for his left arm & leg. A neurology consult was obtained on Wednesday. We didn't see any more seizure activity but the neurologist wanted to proceed with an MRI of the head. That would have to wait because Eli still had temporary pacing wires. Cardiology said they could remove those Thursday so MRI was set up for 10am Thursday morning.
The doctors are concerned because they feel Eli should be more alert than he is. He "wakes" when he's in pain and cries out, but that's about it. His cry is weak, he's not moving or fidgeting much, and he doesn't open his eyes a lot. The good news is that we can get responses from him when he pester him, he will cry and even gives a few "uh-huh" and "uh-uh" answers. But this far out from surgery, they had hoped for more from him.
Dr. Abraham came in this morning and pulled the wires. Eli was going to be sedated for the MRI when someone brought up the fact that Eli still had a pacemaker lead in his heart. We had forgotten that Dr. Abraham was unable to remove one during surgery. He would have had to cut into Eli's ventricle (his only one) to get it out and would have caused more damage than good. Immediately phone calls were being made to check the compatibility of that one little lead with an MRI. They determined it wasn't compatible, so the next option was to get a CT. CT scans provide very useful info, but they are not as detailed nor do they take as long as an MRI. Eli would not have to be sedated. After his CT scan he was to have an EEG (electroencephalogram, monitors the electrical activity of the brain).
He did great for the CT. The neuro lab techs came in and did his EEG. As their protocol, when they're finished, they leave him hooked up to everything while they call the physician. The physician read the electronic version of the EEG. Apparently she called the pediatric intensivist here on the unit and he came to talk to us. Eli's EEG was showing seizure activity. Because of that, they were doing two things. First, convert his regular EEG equipment to a video monitored EEG. After that was set up, they administered a dose of Ativan and monitored its response. After a while, we were told he was still showing seizure activity and they are administering phenobarbital (another type of anticonvulsant). As I type this he is getting his second dose of phenobarbital for a recurrence in seizure activity.
All this seizure activity that we're told he's experiencing is not visible to us. He's not shaking or twitching. Now that he's being continually monitored, we think some of the times he's cried out and we thought it was pain was actually a seizure.
What does all this mean? Why is he having seizures? We don't know. He could be having seizures related to nothing. They could be because of a stroke. His CT scan didn't show anything abnormal, but as I said before a CT isn't their ideal way to diagnose or rule out something like this. If he did have a stoke, evidence of that wouldn't show up on CT for a few more days. What today's scan showed us was that he doesn't have any obvious bleeding in the brain. Of course that's great news, but we still have a lot of unanswered questions that may take a while to get solved.
What would have caused a stroke for him, if in fact that's what we're dealing with? It could be a couple things. The most obvious culprit would be because of being on bypass for so long during surgery. This was the fourth time he was on bypass in his young life. Stroke is one of the risks because even though the bypass machine is pumping his blood so his heart can rest, it's not as effective as his heart. There are areas that may not receive as much oxygen as it requires. A stroke is basically a lack of oxygen to an area of the brain. That causes irritation to the brain's electrical system which can result in seizures. Another theory is that he could have had a stroke related to a septic emboli. That's a fancy name for a ball of pus that flows through the blood and settles in the brain, causing a stroke. We know Eli had a lot of infection in his little body. We've also been told that is one of the complications of staph aureus which is the bacteria causing all these infection issues with him. Again, we do not know if he had a stroke, but it is a strong possibility.
What do we do? The main focus right now is stopping the seizures. That's what they're trying to do with the meds. They knock Eli out so he's sleeping a lot. He seems pretty comfortable. He is appropriately annoyed with us when he rub his feet (he's always disliked having his feet and toes messed with), shake his shoulders, or just talk loudly in his face, but it's never for more than a couple minutes before he goes back to sleep.
We got some other news today. During surgery, Dr. Abraham took several cultures of different areas. Some of them have come back positive. The ones that did were from inside the old graft/conduit and on pacemaker leads. In a strange way, that was good news. It confirmed to us that the right option was chosen for surgery. We didn't unnecessarily put him through a bigger surgery than he needed. Both the graft and the pacemaker were infected and both came out in one surgery. Unfortunately, that surgery has resulted in seizures, but if he didn't have the surgery to take those things out he would never have gotten better. It's a small victory, but at least we know the right thing was done.
Another discovery of small importance is that Eli's PICC line has moved a little. The end of it is not in the vessel it was placed in, it's moved up into a neighboring vessel. That's not a huge problem, but it isn't ideal. The doctor tried to do a "fast flush" to it today meaning he quickly pushed saline through the line in an effort to make it flip itself. Xray showed it didn't work. They discussed just pulling the line out of Eli by a centimeter or two, but decided on another option. Since that PICC line was in before surgery and he's had positive cultures from items removed during surgery, they just want to take that line out. He still has a central line they can give his medicines through for a few days and then get a new PICC placed sometime next week. Again, we don't like that he'll have to be sedated but it makes sense to get out anything we can that could have come into contact with that nasty staph and just start fresh.
So that's the latest Eli news. Sorry it wasn't great news but it's what we've got. Cardiac wise he's doing very, very well. He's actually off all the heart function meds, his vapotherm has been lowered, he's tolerating not having a pacemaker, and his chest x-rays have looked great. They originally wanted him off the vapotherm today, but since they're giving the phenobarbital they decided to keep him on it. The phenobarbital could cause a decrease in respirations so they are keeping the ventilator in his room just in case he needs it (so far has done very well with the meds) and keeping him on the vapotherm for the added assistance.
Bryan and I are okay. Sort of. It was a rough afternoon but we know nothing could have been done to prevent this. He had to have the surgery. It's been a risk with every surgery and we maybe weren't as lucky this time as we've been in the past. We're mainly just tired, mentally and physically. They take good care of us here. We're eating well and make ourselves leave the room at least a couple times a day to go for a walk.
Specific Prayer Requests:
- Eli's seizure activity stops
- he recovers full use of anything we think he may have lost or is decreased
- he starts waking up more and becoming more alert
- for me and Bryan as we process all this and whatever may come
- for Zachary as we're going to be separated for a long time again
- that Eli has NO NEW surprises for us!
As always, thanks for the prayers. Eli needs them more than ever!
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