Thursday, March 4, 2010

Seizures- They can rock your world

The world that I once knew completely changed this week. I picked Addison up from daycare on Monday and was told that she was very tired all day. Got her home and noticed a 104 degree fever. Took her to the last doc appt of the day where she still had 103.8 fever even with medication. The doctor was unable to find any source of infection after running a strep test and checking her urine. She sent me away and told me to keep an eye on her.

Tuesday I stayed home with her and she woke up with a 100.8 fever. I gave her some Motrin and continued to monitor her the rest of the morning. Every temp reading from that point out was 96, 97 and 98. Normal right? As we sat down to eat lunch, Addy turned extremely pale, keeled over and began not breathing. I scooped her up, thinking that at first she had just fainted, until I realized that she wasn't breathing. I panicked!!! Laid her on the floor and noticed the stiffening of her entire body, her inability to breath and turning blue. The world I once knew in this instant completely changed. As I tried to calm myself to start CPR and grab the phone, the thoughts that ran through my head were terrifying. Because this had never happened before I didn't initially realize that it had been a seizure until she came out of it. The thoughts in my head were "Addison, I can't lose you like this!" Absolutely terrifying. As I dialed 911, she began to get start catching her breath. By the time I was done giving my address and description, she was starting to become coherent and responded to me. At that point, I realized what had just happened- a seizure. The whole episode lasted about a minute and a half to 2 mintues with about 30 seconds of not breathing.

My job has prepared me for moments like this- or so I thought. I have seen many seizures occur in my own students at school. I have witnessed them, dealt with them calmly and have been able to follow medical protocol that I have for those students with seizures. Never before has a seizure shaken me to this extent. It becomes so completely different when it's your own child. Everything you once knew goes out the window and you feel totally helpless.

As the firemen and paramedics arrived, Addy laid in my arms, but was very responsive. She did not fall asleep initially as many do after a seizure. We were transported to Troy Beaumont, because my initial request to be transferred to Children's Hospital couldn't happen until we had been seen by a local hospital. On arrival to Beaumont, Addy received a CAT scan, a spinal tap, blood work and urine work-up. Meningitis was ruled out and all test results came back normal. During this time, she also had 2 other very small episodes that are difficult to tell whether or not they were seizures. One was witnessed by a nurse in which Addy entire body tensed up and she turned blue once again, but the whole episode was extremely short and she came out of it just as fast as she went into it. The next episode was even smaller with no change in color. At this point, opinions from health professionals did not feel as though the seizure was fever related. We were then transferred to Children's for further testing and observation.

On arrival at Children's we were put in a room on the observation floor, admitted overnight and awaited an EEG in the morning with a neurology consult. Every thing else from this point forward remained normal- temperature and blood pressure. The EEG came back normal, however neurology's opinion was that of everyone else's in which the seizure did not sound fever related. I order to have a febrile seizure you have to have a quick spike or decline of temperature in the body over a short period of time. This didn't seem to be the case with Addy. At that point we were sent on our way and are now awaiting a 24 hour EEG in 3 weeks.

Everything within me feels like this is fever related. It's just that gut instinct you have as a mother. The fact that she was sick with something that we think is viral and this occurred during that time just makes me feel as if there was a correlation rather than it being an underlying seizure disorder. Now that worst part about the whole thing is that we are forced to wait and see if it happens again.

I have been off work all week and plan to stay home with her the remainder of the week. After two days at the hospital with no fever, she woke up with a 100.3 this morning. Erghhhh! Back to the pediatrician we went and again nothing abnormal was found. She is definitely fighting a viral infection of some sort, or so we think.

So what now??? During that 2 minute episode on Tuesday, life changed. I watch and question her every move. She doesn't leave my side other than maybe the next room in the house. We slept in the same bed last night and for nap today. How do you leave her alone in a room to sleep when all you have is a monitor to rely on? It might be different had she not lost consciousness during the whole episode, and I am so fearful of that happening again.

The feelings then turn to those of guilt. Guilt because I know that she has to return to daycare on Monday and I will feel absolutely horrible if this happens and I am not there. I so badly wish I could afford to stay home with her, but that isn't a choice. Going to school next year will be easier for me because she will be in a program with personnel who are trained to deal with these situations should they arise. Daycare, however, does not typically deal with kids who have seizures. They are all CPR trained, which I am fortunate for, but it's just different when you know they have dealt with and witnessed seizures before. Tomorrow I will be going in to get a health care plan and protocol in place should this event occur again.

All I ever wanted and all I ever do want is to be a mother to Addison. I now again feel like I have to be so much more. A teacher, a healthcare provider, a therapist. I remember not enjoying her as an infant in the way a mother should. I spent my time worrying, watching, diagnosing and being a therapist. I now feel back at this point. I have to watch and worry and wait every second of every day rather than just enjoying who she is.

This blog has been a great way for me to keep a history of things that happen with her and it helps when I need to go back and refer to times when things happened. I also enjoy the ability that it allows for friends and family to keep updated on her progress. Here are a few pics from our hospital experience. I want to thank everyone for their thoughts and prayers over the last several days.

1 comment:

Kimberly said...

Kelly - I am sitting her sobbing reading about what you went through this week. I had no idea. My heart is breaking for little Addy, but boy is she lucky to have such a strong and wonderful mom. You guys are in my thoughts and prayers. Lots of Love, Kimberly