The Fun at the Hospital

Before you read on, please take a moment of silence for the parents that are watching their child have a seizure right now.

I guess it was inevitable that she was going to have seizures, between the sickness and the weening of Dilantin.  They came to the conclusion that it was from the sickness.  So good news is that we get to keep weening her off Dilantin.

Here's a glimpse of what my day was like.

At midnight I was still awake.  If you know me at all, that never happens.  Something was not letting me even want to fall asleep.  12:30 comes and there's whimpers on the monitor.  I go over and just know she is going to have a seizure and she does.  I sit there watching and pretending to time it since it's dark and there's no clock.  I start yelling for Drew to go get her meds.  I wasn't clear and just said meds so he goes to get tylenol I guess.  I'm starting to get mad that he didn't know what I meant.  What if we don't give her Diastat in time?  By the time he gets it, she comes out of it.  She is usually tired after a seizure so she fell back asleep.  We did give her some Tranxene before she fell asleep.  Believing that the extra med will help us continue peacefully throughout the night, I finally fall asleep.

3 hours later I hear crying on the monitor.  I get up and just know another one is coming.  I sit down with her in my arms and watch the whole thing.  She is whimpering and shaking her left arm.  It's almost a little hard to tell she is having a seizure.  It's really hard to hold your daughter in your arms while she has absolutely no control over her body, even her breathing.  Thoughts just rush through your head.  I actually start to think about all of the other parents that are going to the same thing at the same time.  I start to think about her future and how will she ever be able to live alone.  5 minutes seems like an eternity.  How is the beautiful, innocent child going through this?  What did she do to get such a life long punishment?  The 5 minutes finally come around and I start undressing her and lube up the Diastat.  I give her the meds and change her diaper and dress her again.  I pick her extremely limp body up into my arms and just rock her back and forth, waiting for some sign of my daughter to appear.  2 more minutes pass and my daughter finally arrives, but very grouchy.  She sounds like she's in pain, but how would I know anything about what she feels, she can't talk.  I take her over to my bedroom and lay her in between my husband and I.  I'm to scared to have her sleep alone.  I call the doctor and see what our next steps are since the meds aren't working.  She said to come to the hospital if she seizes again.

I guess we fell asleep and my husband moved her back to her room.  I wake up at 8 hearing my daughter.  I take her downstairs to play and relax since I didn't get much sleep.  She seems to be doing better.  We want to make sure she gets her regular dose of meds, so my husband takes her to the kitchen to get them ready.  After the meds were given, she seizes again.  I just head right upstairs to get dressed and pack a bag.  I mean how are we not going to be admitted?  We have been admitted every other time but once.  And if the emergency meds aren't working, how can we care for her at home?

No matter how many times I've packed that bag, I still can't remember what I need to pack and it seems like an eternity to get ready.  I've told myself a hundred times that I need to make a mastery list of things to pack and have it sitting in my closet so I know what to grab.  I guess deep down I feel that would make it official.  If I type it up and prove that I'm ready for her to have seizures, than I am admitting that she's always going to have epilepsy.  Isn't it weird that we feel if we speak something or write it down that it makes it official.  Like it's not going to happen if we don't say it.  The truth is, I knew we were going to have problems 2 weeks ago.  Livy was supposed to have a birthday party today because she turns 2 on Monday but I canceled it.  It was mostly because we didn't have a date yet for getting the feeding tube, but I knew she wouldn't get it that soon.  I canceled anyways.  I just knew we were going to be in the hospital.  Isn't weird that as parents we know.  I can usually tell when she is going to have a seizure before it happens.  But I never tell anyone because then she actually will.  But reality is, she had seizures even though I didn't say it.

We are off to the hospital and it's more crowded than usual.  By the time we are called back, there's even more people in the waiting room.  The student doctor comes in to get details about everything and she starts to seize again.  I don't think the doctor ever saw one before.  She asked us what we do when this happens and we tell her just watch.  I think she was scared.  At least Liv comes out of it in 2 minutes this time.  We continue telling her everything and then we are left alone.  We eat in shifts.  Livy sleeps.  It takes a long time for neurology to come in. And to make an already long story short, they took blood, gave us directions, and we went home.  We didn't have to stay overnight.

When I'm at the hospital, I'm very emotional.  I cry every time.  I read post that people leave on facebook while I'm eating in a room full of people and I still cry.  Most of the people there eating are people that work in the hospital and probably have no idea what it feels to be in my position.  I try to hold back the tears but everything is usually overwhelming.

I'm just blessed that my daughter is a healthy girl.  Sure she is a lot more unhealthy than most kids, but she doesn't have a terminal illness and has no big threat for failing organs.  It could always be worse.  I always realize that at the hospital because you usually do see worse.  Sure we have doctor appointments out the wazoo and go to the hospital frequently and have many therapist, but she could have it much worse.  My long term goal for her now is for her to walk.  I think it will take another 2 years, but she loves to be mobile and I really want that for her.  She enjoys her walker the most.  She could spend all day in that.  I guess it gives her the feeling of independence.  Isn't that what we all want for our children, no matter if there's delays, health issues, or nothing wrong at all?  I'm just so blessed to have a child that is amazing and has taught me so many things!