Brayden has not been himself for the past few days. His seizures have been back, we think mostly because of his rapid growth from good nutrition since getting his G-tube. The seizures have been under control for about three months, until the past couple of weeks. Some days the seizures seem to really knock him out and other days, it is like they never happened. Friday, Brayden slept through his occupational therapy. Which is a pretty impressive task since the OT is stretching him, rolling him and moving him around. Today he slept through his vision therapy. There is nothing to be done when sleeping during vision therapy. On Friday, he vomited a large amount shortly after a G-tube feeding. Then over the past few days he has vomited three times. I walked into his room today to check on him. I smelled something. I walked up to his crib and he was laying there in a large puddle of vomit. He wasn’t crying just laying there wondering what was happening. He looked so helpless and lost, not knowing what to do. I felt the same way. I have put in phone calls to a few doctors to check about the vomit, G-tube and seizures. Fo now, the doctor said to put Pedialyte in the tube feedings to help keep him hydrated. The neurologist will call in the next couple of days and probably up his seizure medications.
When my other two boys are sick we know what to do. Sometimes it is just some good ol’ TLC that they need to get through the yuckies. They can tell us where it hurts and what they need to make it better. Even when they were babies, we felt like we could take hints from them to find the best way to help. With Brayden, I am never quite sure what we need to do for him or what doctor to even call. We have not figured out his cues for being uncomfortable or sick, other than the obvious vomit. I have not figured out when and if we need to hit the panic button or just wait it out; I sort of find an in between by calling the doctors before scooping him up and taking him in. It is so hard to watch him and not be able to help him. The seizures have been very unpleasant looking today and happening many times in a day. His body twists and shakes, his breathing and heart rate are rapid and he just disappears for a moment. We are supposed to count to see how long the seizures last. For the most part they are about 30 seconds. Thirty second does not seem like much until you are watching your child in discomfort. Then 30 seconds seems like forever. There is nothing I can do but talk to him and love him when the seizures are done.
All I want to do is kiss it and make it all better.