September 19, 2016

The Longest Two Weeks Of My Life

This amazing little boy is determined to not let anything kick him down. Once again he's baffled his medical team. A doctor told me he's seen much healthier babies succumb to much less illness. And while we still have a long way to go, we are starting to get there again.

Aiden wore his EEG and was on video surveillance for nearly four days. At one point his seizures were so bad, he was having one every five minutes. My poor husband stayed at the hospital for 13+ hours a day during this time. He couldn't touch or get near Aiden during his seizures to ensure the nuerologist team watching him could get an accurate EEG reading and video of how his body was acting. So David just got to sit there, watching our baby have seizure after seizure, and couldn't do anything for him.

Watching our Aiden helplessly convulse over and over again, while being powerless to do so much as comfort him, is a nightmare for any parent to experience. I'm glad David was there for him during those awful hours. Aiden's little sister Lydia has seizures herself, and I sit and cry each time as I hold her during her convulsions. She always wakes up afterwards and says, "Mommy, I just had a seizure..." and it kills me inside. Watching Aiden go through that while not being able to go near him would have broken me completely. I'm thankful David had the strength to be there when I couldn't.

His neurologist explained to us that sometimes when you get sick and have seizures caused by a high fever, you get a short in your connection somewhere, and your brain gets stuck in a mode of having seizure after seizure. You have to medically "restart" the brain to get you out of that cycle. And in order to restart medically, you have to use drugs.

So we gave him four different seizure medicines separately over the span of nearly two days. Each med seemed to work for a period of time, but after a few hours the seizures would start up again. So his medical team finally decided to try medical paralysis. They gave him a big enough dose that would have equaled going under general anesthesia, with the intention of limiting as much brain activity as they possible could. I tell you, I was up all night waiting for phone calls from our nurse with updates! And as an answer to many tearful prayers, that seemed to do the trick. His brain restarted, seizures stopped, and for the first time in a few days, he went into a REM cycle as he slept.

The next day Aiden finally woke up, but his eyes were stuck at the top of his head as if he was staring at the ceiling. He wasn't able to bring them down or move them at all. So he laid in his crib, distantly staring at nothing, and barely moving the rest of his body. Everyone was convinced it was a sign of exhaustion, and the key was to see small improvement of gaining control of his eyes again.

They wanted to do an MRI to see if any brain damage had happened from the infection. When the day came that he was stable enough to travel downstairs for his MRI, I was a nervous wreck. And of course, we had to wait a full 24 hours before we heard back from anyone. No sleep happened that night, and I could barely function the next day as we waited. But when the neurologist finally came to share the results, his entire medical team and David and I was once again stunned. The MRI came back showing NO brain damage. We were all floored and overjoyed. What another huge miracle we were blessed with. However, after the sickness and his seizures, our neurologist told David and I not to be surprised if he regressed developmentally. She told us that he will need to learn how to reach out at toys, smack his lips, track, and even smile again. I took that news pretty hard. Even after the good news of no brain damage, I was crushed to hear that.

Each day he has been making a slow progress towards being himself again. After a week his eyes were no longer stuck at the top of his head. He is having small moments where he is engaged and acting like himself. When he's like that, I can see the sparkle come back to his brown eyes. My sweet, bubbly boy is there. But those moments have been brief, and you can see the sparkle fade, and he becomes lifeless again. It's so hard to deal with. As I see the light fade, I'll call out to him. More and more he is starting to come back when he hears me. But still most often, as the light fades and he checks out mentally, he sits and looks right through you. Almost as if I'm holding a baby doll, and not my baby. It's been very hard for me to cope seeing him like that. The few moments that he has really looked at me have been what's kept me going these past few days. I hope and pray as the seizure meds wean off, he will come back to me completely.

This past Sunday when the girls came to visit, he did look right at them - and gave them a big smile! I was thrilled to see that! And he has started to slowly move his body and "talk" to us. He has yet to try and reach out to grasp toys, track with his eyes, or smack his lips again. A part of me feels very impatient to have my Aiden back, but I have to remind myself it takes a long time to come back after being so near death.

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