Friday, August 5, 2011


Emily seems to have this horrible cycle of days that we can't get over. Just when she has a few good days in a row ... they come to a halt. Tuesday Emily had three long seizures, after not seeing anything major in almost two weeks. Then she went to sleep that night, and woke up seizing. She was struggling to breath and wouldn't come out of it. I didn't feel comfortable giving diastat when her breathing was so weird, so I packed her up and headed to the ER. By the time they triaged her, her sats were back up to 92 and she was a bit more responsive. They put us in a room quickly, and her sats were at 98 and she was fine. The ER doc asked what I wanted him to do, and I said send us home. Whatever it was, it was over and she was fine.

The next day we had TPN clinic, with our GI. The gj-tube we are trying to get for her wasn't in yet, so we still couldn't schedule the placement and endoscopy. Hopefully it will be in soon. The hope is that she can get medications through the j-tube and the g-tube can drain constantly. Right now I have to clamp her g-tube for an hour after meds, and it drains 24 hours otherwise. The problem is that even after an hour, most of her meds drain out of her stomach. They just aren't digesting. So she isn't getting most meds, and she is still gagging and retching when I give the meds. She throws them up half the time. Because we had been in the ER the day before with seizures, the neuro squeezed us in that same day because we were already in the clinic. He doubled the strength of her VNS cycles, and changed it from every 3 minutes to every 1.8 minutes.

Like I said, it's a cycle. The day we had TPN clinic, I told the GI that she was doing decent. Retching every morning, but not all day. Laughing more, playing with toys, more like herself. This morning she woke up retching and it never stopped. She threw up her morning meds. She threw up her next meds. I didn't even bother trying to give her any more meds.

She is asleep now, but keeps waking up retching. Luckily she only wakes partially up, and is going back to sleep. But it means I am nervous to go to bed, because what if she throws up in her sleep and doesn't wake up.

I hate these cycles. I wish Dr. Gregory House was real - I would take Emily to him in a heartbeat!


Elizabeth said...

I know you just got the VNS recently and Emily has been retching for a long time, but isn't a throat issue one of the possible side effects of the VNS? Could it be causing more problems for her?

Zoey's mom, Heather said...

Oh sweet Emily, hate this all for you and mommy too!

Cycles ... have you had a chance to talk to Reagan's mommy,Tera, at any length? They have been at this for a bit and I know she would be such a valuable source of information and support.I know she would be happy to talk to you on the phone. She would absolutely understand what you are going through.

Sending love and prayers.

Hyper Aspie said...

Oh, my heart breaks for sweet Emily! This just isn't fair! Praying for an answer to these horrid cycles!
Rhi x

Jamie said...

Im with Zoeys Mom! She beat me to it :) Oh sweet Girl lots of hugs sent your way that you get some relief soon.

Lacey said...

Sara, I think Emily and Jax may be talking when we don't know it! Jax is super sick, but as soon as we get to the ER he's fine.
He also had a seizure the other night that wouldn't stop, even after I swiped the VNS like 7 times. Makes me wonder how much its working :(

Anonymous said...


I am so sorry that Emily's going through such a hard time but I am so glad that you're helping others by sharing your story ensuring that what Emily's going through is not for nothing.

Yours truly,
Nisha from South Africa

Cathy said...

Poor Emily and poor you! I can't imagine your exhaustion. Annabel is struggling with much of the same thing. Since coming home from Chicago Annabel has gagged,retched, vomitting most all of the days.We drove to Longview to be at Ashley Kates bday party and when arriving home fever 101.7. You know that ain't good with a central line. Waiting for appointment to see pedi today. I just didn't want to go to the ER here because they would admit her. Today is 10th day for her to be on vanc Iv and still ill. Our girls struggle with many of the same issues. Ok, please tell me does Emily still have the Mitronoff done? We see GI tomorrow and he is so frustrated because almost all Annabel's bug originated from her UTI's and migrates to the belly. But urology doesnt give a flip. Hey he is the 3rd and I may just need to find a 4th.