Parker's Promise

I will see if I can get everything updated right. We are still in the hospital and we'll probably be here a couple of more days. Parker is doing sooooooo much better. He is back to his normal sweet self. He is still wiggly, but much more focused and engaged. Today we pulled out the blankets and pillows and we are playing on the floor. There is nothing like getting out of bed. (He is on continuous video EEG monitoring.)

There is lots of both good news and bad. The great news is that all the craziness this week are not seizures!!!! Phew. What a HUGE massive relief. They actually have not captured any seizures on the EEG yet. This week was very likely due to a reaction to one of the medications.

The bad news is there is plenty of abnormal brain activity that is indicative of seizures, so whether they see one or not, they are likely to keep him on seizure meds for the next few years. (Just different ones, thank you)

They are weaning him off most of the seizure meds he is on in hopes to capture one of the episodes he was having before and at home- specifically where he moves his right arm and smiles with the right side of his mouth. Normally he cannot move his right side well, if at all. I am thankful for phones with video cameras. It is amazing how much help it has been to have videos of all the various episodes he has had. They have been changing and morphing so it was helpful to have both the early and recent variations.

Thankfully these current one are not seizures, but it is likely those early ones were. One neurologist said he was not surprised the seizures started now, as much as he has not had them all along. Don't get me wrong. I hope beyond hope these are not seizures. But with his brain injury and brain activity, they are very likely. And I have to come to terms with that, But... so far these are not!!! So all of the ones 1-2 minutes apart??? Those were NOT seizures!!!! What a HUGE massive relief. It is awful to see your kids get worse and worse, and wonderful to see him come back to himself.

And those have gone away. They were very likely a reaction to one of the seizure medications. The episodes were doubling daily as we titrated up that medication trying to get them to stop. I am so thankful for mother's intuition that said do NOT titrate up on that med any more. And I am so grateful we brought him in. And I am so grateful we did the EEG because a LOT of doctors, nurses and therapists saw those episodes and they looked just like seizures. But they were not! So they were able to stop giving him all of those awful strong meds that knocked him out.

So I am not sure what to hope and pray for. A huge part of me wants him to not have ANY seizures. Yep.

But... If he is going to have seizures, it would be extremely helpful for him to have one sooner than later because then we can be done with the video EEG and go home!!! And we would not have to do the 5 day video EEG in 1 1/2 weeks... They would rather just keep us an extra day or two and capture it now.

So I guess I hope and pray that he will have an episode raising his right hand, and that they can determine for sure if that is a seizure or not.