28 July, 2009

Update 1 on Jennal

This is the first update on my niece, Jennal. It is being made after her partial hemispherectomy, which I described in this blog post.

I just came back from the hospital. I got there around 4am, after having drinks with a friend I haven't seen in over a year. It was really good to see her -- took my mind off things for a while. I actually had two amaretto sours, and I almost never have two drinks in a night. But I think I needed it tonight, plus we were eating so it wasn't all that bad.

Anyway, I got back to the hospital around 4:30am and broke all the rules. Scooted past security (just look like you know where you're going and no one pays you any mind). Went up and got myself into pediatric ICU. Jennal's father was sleeping in a chair next to her bed; I didn't see my sister anywhere so I had assumed she went back to the hotel to sleep. Jennal was WIDE awake. I bent down next to her and asked if she was OK. She told me no. I asked what was wrong, she said she hurt. I asked her where and she pointed to her head, which is wrapped completely in gauze. I immediately got the call button and pushed it for the nurse, who came within seconds.

I told the nurse that my niece was in a lot of pain (I had asked her if the pain was a little or a lot), and that her heart rate was elevated. When I came in her heart rate was around 145, which is lower than what it had been when I had last seen her. The nurse responded with "well it was lower when she was sleeping" -- I just glared at her, so she said she would get something for the pain.

Initially, the nurse tried to push it through an IV line in her arm but Jennal shrieked in pain. I asked if it couldn't be added to the IV as a drip or something, and the nurse finally was able to administer some pain medication.

I sat there talking with her. I was told (once) that only one person was allowed to stay, and Jennal's father was already there. I told her I was getting ready to leave and she asked where I was going and why I was leaving -- which was a good sign (in my eyes) as it was evidence of my "old" niece. When I told her I had to leave she said she didn't want me to go so I stayed, again, breaking the rules. When I told her I would stay, she seemed to calm down a little bit -- her heart rate slowed to about 130 and her breathing became more regular.

Jennal's dad had awakened when I came in, and told me that she he had only just then gone to sleep because Jennal refused to go to sleep. This was in evidence, of course, because I could see from the hallway that she was wide awake, even before I had entered the room. In any event, I stayed for about an hour or two. She finally started drifting off to sleep.

However, when she would seem to drift off, she would start to seize (I noticed her body start to jump violently) but then she would wake up. At one point she told me to stop shaking her awake and to let her sleep -- but I wasn't. It was her going into a seizure that had awoken her, and it stopped when she woke up (or at least it appeared to stop when she woke up). Whenever she would wake up, she would check to see if her father and I were still there, then close her eyes again and start to drift off, only to repeat the cycle in a few minutes, over and over.

When it seemed that she was finally asleep, I took my leave but, before doing so, I told Jennal's nurse what was going on. She just said "OK" and went back to writing reports in her book. While I appreciate that I was allowed to stay and sit by her side, I definitely think that the day staff was much friendlier and more compassionate than the night staff.

[EDIT--6:50am] One thing that I asked the nurse about that puzzled me; they have the monitoring equipment -- electrodes attached directly to her brain and hooked up to a monitor -- to determine if she is having a seizure; however, as was evidenced by my observation of my niece's drifting off to sleep only to be awakend by her starting to seize, no one is monitoring the monitor. I asked the nurse about this and was told that only the specialist can read the signals and interpret them. I asked if there was some sort of alarm to indicate if and when Jennal was starting to seize, and was told that there was not. For someone who is in the hospital for a seizure disorder, this makes absolutely zero sense to me. [End of EDIT]

Rules be damned, there is one thing that I know for a fact: my being there makes my niece feel more comfortable and less afraid. I also helped her be in less pain. So I know that she needs me there. Maybe not 24/7 but as much as possible. And, to the best of my ability, I will be there for her. Everything else in my life can wait; there's nothing more pressing right now than the needs of a scared, sick five-year old girl who happens to be my niece, and that is the priority in my life.

I'm going to take my meds (I think I forgot to take them earlier) and go to sleep. I'll wake up when my mother's anxiety is too much for her to bear staying in the hotel room and she wants to leave -- regardless of the time. I estimate that to be around 9am, which is approximately 2.5 hours from now. Joy!

Will update later. Now that I know I can get online at the hotel, I won't be quite as worried or go through as much withdrawal from being disconnected while in the ICU.

Also, my sister snuck a picture from her phone so when I get that I'll put it up for all of you to see.

Until then, your continued energies, thoughts, and prayers are most appreciated. Please keep them up for this five-year old soldier!