Emma's Grace

While Emma was having that really big seizure, I managed to take a short video of it with my phone.  It’s only 30 seconds long and the quality isn’t very good, but I thought I’d post it.  This is my first YouTube post.  I’m hoping it works.

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We are home at last.  Well, as of a couple of hours ago, anyway.

Emma was released with a new script for Topamax for her increased dosage and a script for a diastat suppository to end her seizures that last longer than 4-5 minutes, in case we need it.

Emma is asleep right now and I’m exhausted as well.

I am off to bed.  A quiet bed.  Without a roommate who turns on a movie for their 10 month old at 11pm.  *sigh*

Good night!

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So yesterday, by 3pm, we had been transfered out of the PICU and into a regular bed.

Emma’s doing well.  She’s had no seizures since entering the PICU.  She was on a dilantin drip, which she has been taken off of now.

The neuros prescribed a regular dosage of Klonopin for her.  They did this because they weren’t sure if the Klonopin I had given her Saturday morning was a regular thing for her or an as needed drug.  I’ve cleared that up and she won’t be getting any more Klonopin.

Her dosage of Topamax has been increased for the evening dosage.  That will start tonite.

Emma’s fever returned briefly yesterday afternoon.  After a dose of Tylenol it went away and hasn’t been back since.

She’s still very sleepy.  When she does wake up, she isn’t really fully awake and hasn’t opened her eyes very much.  Once all of the heavy drugs are out of her, I’m hoping that she can wake up a little more.

If the cultures that Botsford took while we were at the ER come back clean, then it is likely we’ll get to go home this afternoon/evening.

It’ll be nice to be at home and have a sleepy, cuddly baby.  She hasn’t really been comfortable when I’ve held her so she’s been mostly in the crib.

I’ll try and post when I know if we’re getting out of here.

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…don’t forget to cry
- Matthew’s version of the song Had a Bad Day by Daniel Powter

Emma’s back in the hospital.  At the moment, she’s in the Pediatric ICU (PICU).

We woke up this morning after sleeping too long.  Emma was in her room crying.  She was obviously hungry.

I nursed her and afterwards, she was starting drift off to sleep.  I still had to give her the Topamax though.  I made a tiny batch of oatmeal for her, just for the meds, and fed that to her.  She started to drift off.  Then my phone rang.  My sister is due to have her baby any minute and I was waiting for the call.  I laid Emma on a sheet on the floor and grabbed my phone.  Sure enough, Kim was having contractions.  I got off the phone with Mom and went to pick Emma up.

Her hand was twitching.  We haven’t increased her Topamax dosage in a while since she hasn’t really been gaining much weight.  So I was expecting this to come any day.  I knew we’d have to keep an eye on her and I’d probably be increasing her evening dosage.  The twitching lasted for about 30 seconds.  After it stopped, I laid her in her crib.

Ten to fifteen minutes later, I heard Emma make a noise.  It sounded like a cough, but I wanted to make sure she wasn’t crying.  I ran upstairs and she was seizing.  Hard.  Left arm and leg both shaking.  Eyes upturned to the left.  Left side of her face was twitching.

I gave her to Jon while I got the Klonopin.  I gave her a whole wafer to start.  The seizure would go down in intensity but then go back up.  I gave her another half of a wafer.  Not much was happening, but we knew the Klonopin wasn’t immediate.  We both looked at her at the same time and she was turning blue.  When seizing, it is common that fluids will gather in the throat and make them sound congested.  She sounded raspy.

Jon sat her up and she turned a normal color.  This happened another time.  And I just turned to Jon and told him to take her to Botsford right now.  I’d follow with Matthew in a little bit.  Ya see, we weren’t really dressed for the day yet.  We decided to call an ambulance.  The ride to Botsford is very short, but if she turned blue again, I wouldn’t be able to see her or take care of her while I was driving.

An ambulance and a fire truck showed up to our home very soon after I called 911.  They worked on Emma for what seemed like forever.  I’m sure the neighbors were trying to figure out what was going on.

They took us to the hospital where they worked on Emma to get her seizure under control.  By then, she had been seizing for over half an hour.  We’re not sure if it was one big seizure or if there was just no break in the clusters.

Even after the medications, she still had some small stiffening of her limbs, which were seizures.  She was also having problems breathing with the same congestion problem.  It turned out that over the course of the morning, she had developed a fever that made it to 103°.  All of this was very sudden, since she had been perfectly normal yesterday.

Soon after we arrived at the ER, the doctor called for a transport to Children’s Hospital of Michigan.  They eventually arived and I went on my 2nd ambulance ride that day.

Emma is there right now in the PICU sleeping.  Once she is awake and not having problems breathing, they will transfer her to a regular room.  I told the nurse that after large clusters of seizures, Emma would sleep for hours afterwards.  The nurse said it could be days because of the seizures and all of the medicine she’s on.

Before I left, they had put a feeding tube in her nose to give her the medication she needs and milk if they think she’s up for eating.  She’s yet to wake up, but did not like the tube going in her nose.

Welcome to our 4th trip to CHM.

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