It’s been almost two weeks since my last post, and a lot, I mean A LOT has happened. On Monday last week, all three of us stayed home from work. DH and O were both sick. DH was getting over a stomach flu, and O threw up a couple of times. I stayed home to doctor the sickies. I also went to the pharmacy and grabbed some immune boost just to make sure I wouldn’t get as sick as the others. O had a slight fever on Monday night, 100.4, nothing too crazy.
On Tuesday, I thought we could all go back to work and daycare. But oh no! That was not the plan. I felt sick with nausea. So I decided to stay home. O was still looking a little pale. Again, all three of us stayed home. I slept most of the day. O slept a little bit, and she watched lots of movies. I woke up around 1:30 pm, and I joined them in the living room. O was watching Up. Then about half hour later, she was sitting in between us, I look down, and she was convulsion. Her head was shaking, her arms were stiff, her eyes were staring straight ahead. She was seizing. I grab her (I find out later, not to do this), and we both start freaking out. DH more than me. I am still holding her, and talking to her. I tell him, call 911. He calls. As he is talking to the operator, she stops, and he tells us not to let her go sleep. I try to wake her up. She is clearly sleeping, I shake her (not like baby shake thing), and I am so nervous because she is not responding at all. DH comes over and pinches. She finally wakes up, and says Mommy, I tired. Thank GOD! She responds, but again she wants to go sleep. Finally, the firetruck comes (they were closer), and as soon as I hand her over to them, I start crying. They lay her down, give her oxygen, and she goes to sleep. The EMT comes, and they take us to the hospital. By the time we get to the hospital, she was getting a little better, and waking up a bit more.
The doctor sees us, and asks us if she had a temperature, we said no, only the night before. Throughout the day she was fine. They are concerned because the seizure was not caused by fibrosis. As the medical student comes in to check her out, she starts screaming and freaking out. He leaves, and like 5 minutes later, she has another seizure. This one was even scarier because all of a sudden 1 doctor, 3 medical students and 2 nurses pile into the small room we were waiting and they start an ivy, giving her medicine to stop the seizure. They put a little board under her hand, so she doesn’t pull the ivy out, and they started her on fluids. The doctor told us that they will send her for CT scan, then they will admit her to the hospital. At this point, DH and I would alternate between crying and comforting each other. He would be freaking out, I would be calm, and vice versa. We called all our parents. And they too start freaking out. Two hours later or so she wakes up, and they finally take us CT scan. DH goes in with her, she is screaming, and they have to tape her to board so she sits still. Of course, because she is who she is, she breaks out twice. Hours later, they finally admit us to the hospital. While we wait, my parents arrive, and O is cranky and tired. I try to calm her down, and she has another seizure. At this point, the doctor tells us that they will transport us to another hospital where it has a Pediatric Intensive Care Unit to monitor O more closely.
My parents go home because there is not much for them to do especially since it looks like we will be staying in the hospital for a while. My mom agrees to come back when we are released. At 11 pm, we are finally move to the other hospital. We have a private room. O is hooked up to all these machines, and she is just sleeping. We are also told that only 1 parent can stay overnight, but this first night they will let both of us stay. At 5 am, I tell DH to go home, and get some rest. That way tomorrow, he can be with her, and I can try to sleep. At 6 am she wakes up again, and freaks out. Doesn’t want the nurse to touch her, and she is still very very tired. At 6:30 she has another seizure. But it stops by the time they get the medicine that would make her stop. She goes back to sleep. DH comes back around 9:30 and I tell him what happened. At 10 am they put her on anti-seizure medication. The doctors come in and tell us that they would like to do an EEG and an MRI. She can’t eat or drink for 5 hours prior to giving her an oral anesthesia.
First comes the EEG. The lady puts the little goop in her hair, to make sure the probes read correctly. After the test is finished, she says she wants to clean the goop, and I said because she has yet to get good sleep, that it’s OK, I’ll clean when she gets up. So she has the goop in her hair, and slept for like 4 hours. I too took a nap. Finally she gets up, and her bobbed-hair head, with the goop in hair pops up above the crib bumper, and she looks so stoned. Her eyes are droopy. She wants to sit up, but is clearly still affected by the anesthesia, and she keeps falling over. It is quite funny.
The MRI was scheduled for the next day at 11 am. That night she had a pretty good night sleep, and so did I. She cooperated a bit more with the nurse, and didn’t fight her as much. I really did feel bad for the evening nurse. O was not nice to her at all! And the morning of the MRI, the nurse comes in at 6 am, and tells me that O can’t have any food or drink until after the MRI. At that point, O didn’t want any food. We try to wash O of the goop in her hair, but it just ends up that she gets shampoo in her hair, and she won’t let us wash it out. So now she has a flat head with fuzzy tips. And of course, because this is the one time she can’t have any drinks or food, she wants both. It is a torturous 3 hours. She is still on the IV, but I get it. She hasn’t drunk or eaten anything in like 3 days. It is Thursday, by the way. Finally, they give her the oral anesthesia. She sleeps, they take her down to the basement for the MRI, and we wait.
So far the CAT scan was OK; the EEG we have to wait to meet with the neurologist today to get the results. The MRI comes back with a slight discoloration of the fluid around the brain, so now they want to do a Spinal Tap. I start crying because I know how painful it can be. The just want to rule out that it’s nothing more serious. But still, I just feel really bad because she is so little, and here she needs to be poked again. They said that we can do it the same day, but she will need to be put under again. If the initial fluid comes back clean, we can go home. But if it’s not, then they have to do a culture to figure out what the bacteria is and what type of treatment to proceed with.
We decide that we wanted to wait until Friday for O to be put under. We didn’t want her under anesthesia twice in one day. She wakes up from her Thursday anesthesia, and says, Mommy I was in a big boat. With her gigantic frizzy head bopping. She finally has like 5 juices and lots and lots of goldpish.
Now you might ask, how did we spend our days? Well, we watched a lot of Up, Monsters Mink, Toy Story, and Dora. If I see Dora’s round face, I think I will hit her. It was freaking non stop. I think I watched that DVD 5 times a day. For some reason, Dora really got to me. The clicking and the repetitive nature of it. I have to be honest, I missed Elmo a little bit. I know! CRAZY! But true.
On Friday, we got up earlier, she ate part of her breakfast (yey), and then she was cut off to get ready for her spinal tap. We spent the day watch Dora (again, please shoot me now). Then she finally asked, Mommy, I go there. I go caca. I need to hold your hand, so you can go behind the chair. So she stood behind the chair, and finally did her first poo in four days. She more back to her normal self. She was jokey, and laughing. She was less aggressive with the new nurse.
Then at 11 am, they start getting ready. At that point O fell asleep for her nap. The doctors got ready, and they pretty much said she won’t feel a thing. This time the anesthesia was administered through the IV. It took no time at all. We stepped out of the room because I couldn’t watch that.
O woke up much faster from this, and she was bopping her head. The first she said, Ghema coming. Pankie Coming. Which is what we were talking about right before she fell asleep. Phew, she is normal. The results came in 4 hours later, and we go the all clear! By 6:30 we were home, and getting O ready for bed. The doctor gave us anti-seizure medication which she will be taking for 15 days.
Today we go back to the neurologist to find out what the EEG said. So stay tuned.
Right now, O is doing fine, and back at day care. More to come on this.