OK... so here we go part 2 of the epic story. =D Don't you love my dramatic flair?
First, to answer the question that I'm sure many of you have on your minds? Is it Meningitis? ... Thankfully, no!
Here's how we got to that conclusion.
So last I left off, we all went to sleep exhausted after a long day of hospital visits.
The next morning, we all woke up after not really resting solidly throughout the night. The doctor came in to check in on Alicia around 9:00 and told us that he wants to schedule Alicia for a brain scan later that morning in order to rule out any abnormalities in brain function. This scan would be different from the sonogram in that it would measure brain waves and not just show a picture of her brain.
Also, knowing that the ophthalmologist had some concerns over Alicia's eyes, he also ordered a test done that would measure on a neurological level how well her eyes were transmitting signals to her visual receptors. Both tests would be done that day.
Now, what you just read, I hope seemed pretty coherent. Very different from my state when the doctor was talking to me. When the doctor, spoke I did NOT get all that information at all. All I knew was that she was going to get some sort of test done sometime during the day. In fact, I find that a lot of times when doctors speak, it's only in processing back the information that I really understand everything that they were saying to me.
Anyway, so back to the tests. Both of these tests involved putting Alicia to sleep, so about half an hour after the doctor left, a nurse came in and gave us a dosage of sleep medicine to give to Alicia orally. Simple enough, right? NOT.
This medicine apparently is really bitter and kids really dislike the taste of it. Linda has had a lot of experience with this medicine, since she had to on two prior occasions give Alicia the same medicine to put her to sleep for a couple of auditory tests done earlier in the year. Knowing Alicia's reaction to taking this medicine, it was with dread that we faced the task of feeding it to her.
Knowing that the medicine was really horrid tasting and that Alicia wouldn't like it, we asked the nurses if they had any kind of syrup or sugar to help the medicine go down. (Anyone humming Mary Poppins?) The nurse matter of factly told us no, they didn't, as if it wasn't their concern how we got the medicine down Alicia's throat.
Well, we took a deep breath, and decided to try our best. Oh, man, you should have seen Alicia's reaction as soon as she saw the medicine. We could barely get a drop in, so I told Linda to go downstairs to a coffee shop or somewhere to see if we could get some syrup. So she left, and I sat there with Alicia trying to figure out how to get this medicine into her.
That's when the nurse came in. She saw me struggling and asked me where Mom was. And I said she went to get some sugar. The nurse looked at me and said, "There's not enough time. The test is at 10:30 and it was already 10:00. We need her sound asleep for the test. Give me the medicine, I'll help you."
Oh, man, what happened next was a scene straight out of a horror movie. You should have seen Alicia kicking and screaming and thrashing about as I held her head and body still as the nurse dropped the medicine down her throat. Wow. You would have thought we were burning her alive, the way that Alicia was reacting. I felt like a horrible man for willingly participating in the "torture" of my daughter.
Well, as soon as we got the medicine down, in comes Linda with the syrup. Too late honey.
We thought we would maybe give Alicia some of the sugar to wash the taste out of her mouth. She would have none of it. We ended up dropping most of the sugar on our bed and just giving up on the endeavor.
Eventually, Alicia fell asleep in my arms, and it was time for us to bring her down for the test.
Oh, man. Another battle. Alicia is a very sensitive girl and quite aware of her surroundings. We brought her into the testing room, and as soon as we layed her down on the bed, she would awake and start crying. So we picked her up to calm her down and get her back to sleep. As soon as she was asleep, we would try again. Again, as soon as her body hit the bed, she had another crying fit.
The technician felt bad for Alicia, since her eyes were getting all red and swollen from all the crying, so she said, maybe we should just take Alicia back to our room, keep her awake, and then later on in the afternoon, we could bring her back when she was more sleepy.
So we picked Alicia up, pushed her IV stand and started walking back to our room. Half way back to our room, we realized that the medicine was really taking effect, and that no matter what we did, Alicia would NOT wake up, so we decided to go back and see if we could try again.
The technician was gracious and allowed us into the room again. Thinking she was fast asleep, we started to lay Alicia down, but once again, she woke up crying. Linda decided to see if her mother's touch could calm Alicia down enough to let her sleep. So she picked her up, rocked her back to sleep, and tried to lay her down. Again, to no avail.
Eventually, what we ended up doing was Linda rocked Alicia to sleep, and then as soon as she was asleep, Linda climbed onto the bed, and lay her down, and then lay on top of her until Alicia calmed down enough to fall asleep. Thankfully, after 30 min of battling with her, Alicia finally fell asleep enough to get the sensors on her head, and finish the test.
Forty-five minutes later, we were back in our room, and Alicia was out like a light on her bed.
We got to rest for a couple of hours, and then we were informed that it was time for Alicia's second test.
I won't go into all the details of the second test, but suffice it to say, we went through the whole ordeal again. At first, we thought we didn't need to give her another dose of the medicine, but as soon as we laid Alicia down on the bed, she woke up and this time she became wide awake. So we had to go through the process of feeding her the medicine, rocking her to sleep and then gingerly putting her down only to have her wake up again.
This time, we decided that when we put her down, we would just let her cry herself to sleep, which thankfully she did. At which point, Linda and I left the room and let the technician do her thing.
This time the test took about 20 minutes, and we were back in our room.
A few hours later, Alicia's doctor who is a specialist in pediatric brain development and neurology came and gave us the results of her test. He told us that there was nothing too abnormal with Alicia's brain function. Praise God. He said of course, because of the brain damage she suffered when she was born, her right brain was not firing at the same rate as her left brain. But he said that was to be expected. And at this point he said it wasn't anything too big to be concerned about.
He said that since all tests came back normal, his diagnosis was that Alicia had the spasms most likely due to the fever. He said that the first 72 hours after an instance of seizure is critical so he wanted us to say in the hospital to monitor Alicia's fever, and also to see if she would have another episode.
As for the eye exam, he explained to us that the test measured how quickly it would take for a signal to go from the eyes to the visual receptors in the back of the brain. He said that for Alicia her results were a few milliseconds off from normal, but that as she grew older this would be barely noticeable, and again nothing he's too concerned about right now.
So thankfully, our Alicia is doing well.
The past few days have been just a lot of resting and sleeping for her, and a lot of us fighting to get medicine down her throat.
But overall it's been a great time of rest, and for the family to be together. Definitely a lot of cuddle time for me and baby girl, which I am enjoying, despite the soreness and crampiness I get in my body after lying in bed for hours at a time.
Praying that Alicia can quickly get this virus out of her body, so that we can all go home and get some proper rest.
Pray with us that Alicia can get well quickly, and that she can go back to being her smiley cheerful self again soon.