Thursday, August 11, 2005

I can't believe it's been 2 weeks today since this journey began. It's been full of ups & downs that's for sure. Today seemed to be a pretty down day. I guess after 2 weeks of trying to hold my head up high, I finally collapsed. It's been quite an emotional one for me, as I just can't seem to keep it together. He's so sweet & innocent, I just can't stand dealing with this. I'm not ready for what the future might have in store for us.

For the last couple of days, Jacob appeared to be doing well, however, I began to notice some increase in head & mouth movements. Today it escalated & my gut just told me something isn't right. I clocked him for 2 hours & 20 minutes; constant head movements, jerking back & forth as he tried to fall into a deep sleep. He looked so uncomfortable & at times would let out what I would call 'his cry' as if to say "make it stop, I'm tired & just want to go to sleep".

After he finally got into a deep sleep & all parts of him were relaxed, I called the nurse over & said I wanted to speak with the neurologist. It took a few hours to track him down. When he arrived, he could tell I was distressed about something. I explained to him what was happening since he last saw Jacob. As we talked, it aroused Jacob & he began to twitch again. Head jerking back & forth, eyes jerking, mouth twitching. Dr A. Johnson observed for a few minutes & then asked that I un-swaddle him so he could thoroughly examine him.
Although Jacob's arms & legs were fairly stable, his head wouldn't stop. It was decided to get an EEG hooked up right away to see what was going on, which will run for 17-18 hours. It's unclear if they are seizures or not & he also stated that it's possible his movements are just migrating to different areas of his body. Grreeaatt

He also ordered the spinal tap be done tomorrow, as well as some more blood work for additional testing. He also wants to look at the area of his blood that came back abnormal the last time to see what it looks like now. Apparently it should be zero, meaning you shouldn't see it in the blood at all; Jacob's level was 16, clearly abnormal. Looking at this again, might offer some more clues as to what's going on.

Once the spinal tap & blood work is done, he will add Keppra to see if it helps with the myoclonic movements.

The good news is Jacob was alert again today & did take another 3 cc's by bottle; still not much sucking going on though.

They also decided to increase his oxygen to 100% & decrease his flow to .1 liter. This is a more standard mix for him to go home on, should he need oxygen, which I'm guessing at this point will be a given. We also talked a bit about the G-Tube today. Although we still don't want to do it right now, most of us are getting prepared for the fact that it most likely will need to happen in order to bring Jake home.

I can only hope we'll have some answers soon...if only I had that magic crystal ball.

Overall Status: So-So Day
Visitors: Jared & Sara

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