Neurologist

We met with Dr. Ritacco, the pediatric neurologist early this morning. Since the moment we were told we had to meet with this guy, people have done nothing but praised at how great of a doctor he is. He came in and did a full evaluation on Brayden. He moved him around trying to check out his muscle tone and strength. He checked to see if there are any deviations between the right and left hand side. After the full evaluation he went and reviewed his chart and all the data that was collected from the electrodes. After he did his evaluation, Dr. Ritacco met with us for about 30 minutes explaining the situation and let us ask as many questions as we wanted to.

Dr. Ritacco said the good news is that Brayden has not had an outright seizure since they started the second medication on him a little after midnight on Wednesday morning. He did have a few small abnormal brain activities, but nothing too serious. He still has a large dose of phenobarbital in his system, which is anti seizure medication right now. The goal is to try and regulate this level so that it is not too high, but enough to help him prevent any more seizures. They are trying to achieve what they call a maintenance dose. Right now his blood level of this medication is at 62, and they would like it to be between 25-40. So he is a little on the high side right now, which could be blocking some seizures.

Why the stroke occurred? We don't know and we will never know. They don't know when it happened or why. It just happened. The doctor did say that it was a small stroke. What happens is that the area gets very irritated with swelling and blood. The most important time period is the first 72 hours after the stroke has occurred. So we have cleared that time period with Brayden. The damage is done in the brain and the seizures are just a side affect of the stroke. Every time he seizes, there is no additional damage being done to his brain. Unfortunately when he does seize we just have to let him seize. This is going to break my heart, but at least we know it is not hurting him.

The area in the brain in which the stroke occurred was the left parietal lobe. In adults, this area normally controls motor skills on the person's right side of their body. Although this is the case in adults, we still don't know how Brayden will be affected. He noted that a baby's brain is like a clean slate. Nothing is completely defined yet other than what they need to do to eat and breathe. So if there is something in that area that is missing, the brain could compensate for it in another part of the brain. It just re-wires the area to make up for the loss.

Dr. Ritacco thinks that Brayden's outlook looks good, however we will just have to wait and see when he grows and gets bigger if there any signs of difference between the right and left hand sides. He is going to have to be on anti-seizure medicine initially for 3 months. What they do is in about a month and a half they hook him up again and monitor his brain activity. If there are no significant deviations, then we would slowly ween him off the medication. If there are problems then he would stay on the medication. Dr. Ritacco thinks that there is a good chance that he will just out grow the seizures. At this point Jon and I are optimistic about the outcomes, but of course we will be very cautious going forward with him. He is going to have many checks along the way. He will also have a full evaluation done in a few months with PT and OT to see if we need to start some therapy on him now. So even if there are some physical side affects we can catch them early.

Going forward, Brayden needs to have a lower level of anti seizure medication in his blood. They draw his blood once a day to check to status of that. Once we reach a good level, then we need to maintain that level. So he will be in the NICU for a few more days until all of this has happened. We also have to make sure he is off all of his IV's and the feeding tube. They started to feed him through a bottle late last night and we got a report this morning that feeding will not be an issue. As long as he was awake he can have the feeding through the bottle and as much as he wants. Well, little piggy at different feedings 40 cc, 50 cc, and the last one was 60 cc. Keep in mind they were only feeding him 10 cc when they started the tube on Wednesday. He is going to be a big strong boy. We just a call from the nurse about an hour ago that they have taken him off all the electrodes so we will finally be able to hold him!!! I am finishing this up and we are rushing over there to hold him for the rest of the night. Thank you for all the great thoughts and prayers this week. They have definitely helped out!!!