Monday, November 09, 2009

Some answers and some more waiting

Today has been a long day. A really really long day. Right now I wish I could go to bed and sleep until tomorrow. That isn't going to happen, but I can wish, can't I? What follows is a long post and I cannot promise that it will be coherent, so consider yourself warned...

Our long day really started last night. Emily has been having some crying fits lately. Sunday nights seem to be her prime time to do it. Last night, when we put her to bed at 9, we thought we were free and clear - no crying fit! We started a Scrabble game because that's the kind of wild people we are. Around 10, we heard Emily screaming and ran in there. She was crying and pulling her legs up like she was in pain. We got her out of bed and tried a few things to calm her:
1 - Turn on Gloworm - at times, she instantly calms when Gloworm is on
2 - Lay her on her side and rub her back and/or pat her bum
3 - Lay her on her back with her legs bent and rub her belly
4 - (the old standby) Check her teeth to see if they are bothering her

She was up for about 30-45 minutes before she finally calmed down. It was awful to see her in pain, but she really did save us from a terrible Scrabble game - terrible! Anyway, Mike went to bed and I stayed up and did some research on the computer. Around 11:30, she woke up crying again. I don't think she was up for very long.

I finally got in bed around 12:30 and was just drifting off to sleep when she woke up at 1 screaming and crying. This time around, nothing was working to calm her down. We were trying to do what we could to help her to pass some gas - she looked like she was in so much pain! We "vented" her g-tube (she can push air out and push out some formula if her stomach gets too full). I finally put her on my lap, pulled her legs up and wrapped my arms around her tight so she would feel secure. She did calm down and passed a whole lot of gas. We put her back to bed around 1:50 or so and thought that might be the end of it.

We thought wrong! She woke up again at 3:30 - screaming and crying in pain! Mike put her on his lap and she was calm almost instantly. She was sitting there licking and smacking her lips like she was eating something. That is when I had a thought - reflux! Maybe she was having reflux!?! We still have her Prevacid so we decided to give it a shot. I crushed the pill, mixed it with water and pushed it into her tube. Not all of it went through, but most of it did. We put her back to bed and all of us slept until 8 - what a welcome relief for all of us!

Today we had an appointment with her ophthalmologist and the nurse practitioner at the neurologist's office. The eye appointment was pretty uneventful, in that, we didn't learn anything new. Emily does not like having drops put in her eyes and she does not like being in a dark room while someone flashes a bright light in her eye. The doc said he has seen some improvement with her vision, but believes there is still a disconnect in her brain. Her eyes work fine, but her brain struggles to "register" what she is seeing. We will follow up with him in another 6-9 months.

The appointment at the neurologist's office was bit more eventful. First, they called this morning to move our appointment yet again! They moved it from 12:30 to 1:30. That actually worked better because Emily could have a longer nap. We arrived at the office at about 1:20 and left there at about 3:45. We spent a good 45 minutes to an hour waiting in the exam room before the nurse practitioner (NP) even showed up. Mike had just taken Emily to change her diaper when she arrived. Did I mention that this office frustrates me just a little bit? Anyway, we were able to get all of our questions answered and we have a game plan.

Emily did not have any seizure activity during the EEG. She did have some "firing" in the right front lobe, but that is not unusual for her. The NP said that if we are not able to get her seizures under control with the changes we will be making or if we continue to have concerns, she will send us for a 23 hour EEG, we would stay at the hospital and Emily would be hooked up to an EEG and be on video during the entire test. We would be with her and if we saw any odd behavior we would just push a button and they can look back at that later to see what was going on in her brain at that time.

The NP was a little confused about why the doc that was on call during our ER visit would give Emily a new med instead of increasing her Keppra. When we were in the ER we were told that Emily was on the right dose for her size. The NP said she is on a moderate dose, but there is room to go up (I think she said there was enough room to almost double her dose). Since Emily has had very little reaction to Keppra, we decided that we would increase her dosage on that and then wean her off Depakote. This whole process will take about a month and a half. We will begin the process of increasing her Keppra tomorrow. Once we reach the right amount, we will then start the decrease in Depakote.

Of course we will be watching her like a hawk to see if there is any seizure activity going on during the whole process. If increasing Keppra does not solve the issue, the NP had two other meds in mind for Emily to try. For right now, we will just worry about the next step and cross that bridge when we come to it.


Stephanie's Mommy Brain said...

Wow! I bet you are tired!!! Yeah for having a plan!! BOO!BOO!BOO! for making any child, much less a 2 year old!, wait 45 minutes for a scheduled appt.!!!!!!!!!! That is just not professional!

Tami and Bobby Sisemore Family said...

Hi Dawn,

Thanks so much for sharing all this with us! I have a 19 month old baby boy with severe cp waiting in Taiwan for us to raise the funds to go get him and I am trying to learn all I can to be as prepared as possible. First off, big hugs to yall for the night of such rouch sleep. Poor little angel! And also doc office waits can be torture. Goodness! I was interested when you shared that there is a disconnect in what her brain sees. I wonder if Jeremiah is like that. We have been told her has Visual Dysfunction and we have read some papers that said the front of the optic nerve is fine and they eyeball is fine but a test, I think it was a VEG or something like that showed poor responce and so from what is understood is that he can see but his brain mixes it up. I have no clue. Anyway, just the way you worded about your little princess jumped out at me. Jeremiah also has been having seizures and is on Depakote and from what I have read about it that medicine can damage his liver so I am hoping when we get him home that medicine can be changed to something else, thanks for sharing the name of a medication. Your daughter is such a beauty! :) I look forward to getting to know yall better through your blog!


Katy said...

Well, honestly, that sounds good to me. That depakote is probably why you had all that tummy trouble the other night--I've heard nothing good about that stuff.

We're off to see our neuro tomorrow and hopefully we'll be getting Charlie off of phenobarb. Yikes! So scared to have that conversation.

Anonymous said...

So sorry to hear about the rough night but also glad that it may be bringing some good changes for little Em and the two of you. I will be praying for stamina during today, as I know you must be emotionally and physically drained. Waiting anxiously with you for results.

God's peace,

Jenkins said...

Ugh...those appointments...always exhausting. Our eye appointments are the same.

As for those seizures...not fun at all. And those EEGs are so hard. I think I mentioned this before but I will again just in case. We had problems "catching" a seizure on any of our little guy's EEG and we have had many. I felt crazy...I was sure I was seeing things at home that were not right. So we started video taping them. I have the video camera in the kitchen all the time. We charted about the long they last, what they look like (how the head was turned, eyes, heart rate, etc.). Then would take all of that into the neurologist. It helped us so much.

I pray that Emily was get relief from the seizures with the adjustment of the meds.

And a good night sleep!