Living with Chiari – Post Surgery (at home)

1/19 9:30am: Adam took a really cute picture of Spenc and me, it’s below. I had to move this post up since it is the one getting up dated. 🙂 Our first night of more sleep seemed to go well, with the exception of THE. WORST. DREAM. EVER. I won’t go into details, but I woke up had to check on my baby then cry to Adam about how awful it was. 😦

On to happier things though, I took a shower this morning before Adam gave me the Valium that makes me TOTALLY pass out, and my hair looks more like I actually did it than it has in more than a week. 🙂 It won’t last long since I’ll be going to sleep on it again soon, but small victories.

Discovered in the last few days, that the thing that hurts the worse on my body right now is my hair. I’m not even kidding. Since I’ve been sleeping on it a certain way and it just kind of stays that way, whenever I move it to brush it or wash it, it is really painful. Weird, huh? I don’t think there is anything that can be done about that, so I’ll just have to live with it. 🙂
1/18 12:45pm: Adam just took Spencer out for a bike ride. 🙂 It was our first day to have Spencer back with us all day and all night. It felt great to have our whole family here. When I took my morning nap this morning, Spencer did great. Right up until it was time to go. But the best thing was hearing him call “Momma!” “Momma!” and trying to get into my room. It was a great feeling knowing he wanted his momma.

On a medical note, we are getting my stitches removed on FRIDAY afternoon. Yeah! We also decided to change my nighttime pill schedule. I was having lots of CREEPY dreams and so was Adam. We are taking my 3 hour doses and going to make them a 6 hour dose (which is perfectly fine according to our doctor). That way I only have to wake up once at 1am instead of at 10, 1, 4 and 7. So, I’m feeling good now. We’ll see how the rest of the day goes.

1/17 6:10 pm: I guess it is up to me to update the blog now, but I can mostly handle it. It just won’t be as often as Adam did it, but that was when information was more critical. 🙂 Well, it’s the first time I’ve been left alone at home. Spencer and Adam are off on a grocery run. Leaving me here to fend for myself. Lucky me, I am feeling pretty good. Everyday comes with a new little challenge, but it always seems to get better. We have a “routine” that will likely change now that Spencer is home, but maybe not. 🙂 We can predict when my bad times of day will be usually, and know why so they are easier to deal with. All in all, things are looking better.

1/16 12:42. I feel like I just got up for the day (although I’ll probably be taking a nap in a little while too). I am on so many medicines that make me tired. I actually woke up at around 9:30 am (after going to bed at 7:45), to eat and then take more drugs that knock me out completely. So, after being up long enough to eat breakfast and watch a TV show with Adam I was back to bed and didn’t wake up until 12:30ish. This does seem to be an odd pattern I’m in.

I have discovered that if medicines say that have a drowsy side effect, which didn’t used to affect me at all, REALLY do a number on me. I’m one of those people who really shouldn’t operate heavy machinery after taking something like that. Who knew!? The doctor says my brain is learning to see certain parts of the world in a whole new way (since I had the malformation forever) and to expect stuff like this. It will be interesting to see. 🙂

2 thoughts on “Living with Chiari – Post Surgery (at home)”

  1. I am so glad each day is a little better for you. Hang in there!!! It is amazing to think about what the Dr. actually did in surgery and that thinks are going so well. I am excited to read about all the changes you will notice as time goes on, because of the surgery. Hopefully all good!! 🙂 Take Care!!


  2. Yay for healing! I’m so glad that you are getting the sleep and help you need. (And hopefully no more bad dreams!) Your family is in our prayers. I hope each day continues to reveal tender mercies and small victories. 🙂 Love ya girl.


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