31 July 2009

Update 4 on Jennal

This is the 4th update to my blog about my niece, Jennal, and what she's been going through. Here's a link back to the 3rd update on her condition. If you haven't been following this story, please read the original blog post.

As I mentioned in my 3rd update on her condition, the second procedure that was performed on Jennal, which was the full hemispherectomy, was performed without incident. When I returned Thursday evening, my sister had left for her OB/GYN appointment. Thankfully, the twins are doing OK; they're moving around and everything her doctor told her seemed to be good, so far.

So getting back to Jennal, her father was with her. She woke up when she heard me speaking with him. She was extremely grouchy and yelled at us for waking her up, so we had to whisper but even then, she could tell that we were talking about her.

Jennal was in and out throughout most of the night. She did manage to fall into a deep sleep a few times (we could tell when from her vitals -- how frequently and how deep her breaths were, and her heartrate, etc). I was sitting by her bed side and, throughout most of the night, she was holding onto my hand. She did not want me standing beside the bed -- she didn't want anyone standing next to the bed, in fact.

Whenever the nurse would come to change an IV bag or do something, she would wake up and say, "Excuse me I don't want that." It didn't matter what that "that" was -- Jennal was done having things done to her. It was both adorable and heartbreaking all at the same time.

Jennal told me that she wanted me to take her home. I asked if she wanted to come to my house and she said no. She wanted to go to her house, but she wanted me to take her there and go with her.

As for her vitals, they're almost normal for a child of her age. The only thing that really is worrisome is the temperature. At one point during the night it came back down to normal but then in the morning it was up again, over 101. Additionally, after viewing the monitor for such an extended period of time, I came to see that Jennal's heart is not beating regularly. She has an irregular heart beat, which the doctors knew about. It's like she'll have three regular beats and then it'll skip for one or two beats, then she has three short but quick beats, then it'll go back to regular for a few beats, and then the cycle repeats. I'm very concerned over this, as I'd never had the time to study it on the monitor before.

There were times last night that I tried to leave Jennal's side but she just gripped my hand when I tried to pull away -- she didn't say anything but her intent was clear; she didn't want me going anywhere. When I finally had to leave this morning to get some rest, after the doctors had done some poking and prodding, I heard her say, "Don't leave Uncle Peter." Although it broke my heart, I did have to leave; otherwise, I would be of no use to her and my sister tonight. My sister will be here tonight alone, with me, just as last night it was Jennal's father who was there alone, with me. My being there enabled him to get some rest, just as my being there tonight will enable my sister to get some rest. And that's why I've been there this entire time, to enable both of them to get some rest.

I'm a nocturnal creature; my sister knows this. So the secondary or tertiary reason for my being here (primary being to be there for my niece, secondary to be there for my sister) is to give my sister and her fiancé a break so that they can get some rest, as they know I'll watch over Jennal with at least as much--or more--vigilance than they would.

The first two years of her life, Jennal and I lived together. As such, we formed a special bond. Jennal first will turn to my sister--her mother. If she's unavailable and it's a choice between her father and me, for some reason Jennal turns to me. I don't know how she knows it but I think she knows that I'm closer to her mother by relation than her father. Maybe it's that Jennal and I look so much alike -- you would not be able to tell our baby pictures apart.

We're waiting on the results of the sedated MRI that Jennal had to undergo this morning. I guess those will come in tomorrow or on Monday. So now I'm going to grab something to eat and head back to hospital to watch over a very cranky Jennal.

Oh, one thing I wanted to mention is that Jennal doesn't want anyone going near her or standing over her--it's as if she's scared that they're going to do something to her, perform another procedure, or move her (which causes her pain), or something. She also picks up on any medical words and if you mention anything medical around her, she'll say, "Excuse me but I don't want [that]." (and actually if she has trouble pronouncing "that" then she'll actually just say, "that."

It's really quite adorable, humorous, and at the same time it's so heartbreaking because I can feel my niece's pain, frustration, and anxiety. She wants to go home and have people stop doing things to her, but things must be done to her (medically) in order to ensure that she recovers properly and in the best possible way.

They're talking about stepping her down from ICU to a high-level care bed in order to start physical therapy with her, as she's literally just been lying in bed since Monday without moving. She is not going to like that at all -- people trying to get her to move around and what not. As it stands now, if you ask her to do something she'll tell you that she doesn't want to do it, no matter what it is (unless it's go home). Eat, drink, sit up, move her arm, move her leg, take her temperature, open her eyes, close her eyes, wiggle her toes, laugh, watch TV, play with Barney (one of her favourite television characters) -- she doesn't want to do any of those things.

I can only imagine the level of pain that she's in now. When she's feeling a bit better, I'm going to have to let her feel the ridge on my head, from where my head was cracked open when I had my automobile accident. I'll show her this and let her feel it, and tell her that I have a head boo-boo, too, and I got all better. Maybe if she sees that I got better from my head boo-boo, it will make her feel less anxious and more hopeful that things will be OK for her. We can only hope, right?

Finally, I just wanted to say that I would not have been able to do this, to be here for my niece and my sister/brother-in-law, without all of the wonderful support that I have received from all of you on Twitter and Facebook. Every time I'm about to give in to my Depression, somebody sends me a tweet, or comments on my Facebook status, and that short message gives me the strength and energy to continue plodding along. I can tell you that my sister and brother-in-law feel the same way from the messages that are left on their Facebook profiles.

So please continue directing your healing thoughts, good energies, and prayers for Jennal. And thank you all so much for your tweets of support. I can't get through this without you! I'll try to get some new pictures of Jennal for you all to see as soon as my sister can sneak them...