07 August 2009

Update 6 on Jennal

This is the 6th update to my blog about my niece, Jennal, and what she's been going through. Here's a link back to the 5th update on her condition. If you haven't been following this story, please read the original blog post.

What a whirlwind these last few days have been. Jennal's fever really began to spike so I spent quite a bit of time down at hospital. She's doing better now, insofar as the fever is concerned. It still can run up to 101.something quite easily, however. I wish her body were adjusting to this procedure better but I guess it's just a matter of time. It is cause for concern, however, so that's something that will have to be monitored constantly.

Jennal really is not doing well in the setting of a hospital. She totally does not want to be bothered about anything, by anyone. She won't let doctors, nurses, and other hospital staff approach her or do anything to her. Right now, the only people who are able to do anything for her are her family.

As such, Jennal's parents are trying to arrange to bring her home for her recovery, instead of completing it in hospital. The expense will be considerably more but we all believe that it is in Jennal's best interest, both medically and psychologically.

At home, Jennal will have (if the insurance expenditure is approved) her former physical therapist, with whom she has a good rapport, her home nurse, her family, familiar surroundings, and fewer interruptions by people whom she doesn't know, doesn't trust, and believes will cause her more pain.

Physically, Jennal isn't ready to come home. We've been putting her in a wheelchair to get her sitting up, trying to strengthen her for the 45-to-60 minute drive home (depending on traffic) from hospital. If she can't tolerate in a chair, sitting up, for at least sixty minutes, then her parents will not be able to bring her home.

It's extremely painful for me to watch (and sometimes participate) in this -- pushing Jennal beyond what she wants (or, perhaps, is ready) to do. Moving her, especially lifting her and placing her into the chair, causes her such pain that she almost shrieks. It's something that must be done; however, I wish there were ways to further reduce her pain levels when this occurs. Even just wheeling her around the pediatric unit, as I've done a few times, is most difficult.

First, she doesn't want to leave the room and the comfort of her parents. Second, once they persuade her to leave with me, when we approach the doors of the unit she gets extremely upset, repeating over and over "I want to go back, I want to go back to my room NOW" and "No I don't want to go there again."

To see my niece in such a condition truly is heartbreaking for me. I'm so used to seeing her in such a better state. I can only imagine what her parents are going through; however, I know that they're doing everything in their power to help her heal -- both physically and emotionally -- from this experience. And it seems to be working.

As can be seen from this photograph of Jennal's head (click on the photo to see a larger image of it, in full-scale), they really weren't kidding when they spoke of removing 1/2 of her brain (an entire hemisphere).

Other positive signs are that she is starting to eat a bit more (the IV lines have all been removed and feeding via IV has stopped), and she's drinking more as well. It's nearly impossible for her to chew at the moment so most of the food she can consume is very soft -- pasta, mac & cheese, rice and other soups (an Asian dish), etc.

This is what my sister posted to her Facebook account. I haven't heard from her w/in the past 24 hours so I don't know whether or not Jennal has, in fact, been brought home or if she's still in hospital. I'll have to find out today, to determine where my journeys will bring me:

Aiming to bring my baby girl home today, shes not ready physically, not even sitting up yet on her own, but shes too terrified there. She wont recover, wont let a Dr, nurse or PT near her. I pray these fevers subside soon and she improves physically and emotionally with all of our love, care and support. You all played a role in helping her get this far with your prayers, thank you and may your kindness be returned. 22 hours ago

I, too, hope that Jennal will be home soon, where--hopefully--she can recover much quicker than she has been doing in hospital. While NYU Hospital, Langone Medical Center, might have some of the best surgeons in the world, especially for this type of procedure, the nursing and other staff leave much to be desired, especially as compared with the local hospitals in Westchester County, New York and Greenwich, Connecticut (specifically, Westchester Medical Center and Greenwich Hospital).

Out of the past 24 hours, I've spent at least 18 of those sleeping -- catching up on much-needed rest. This entire ordeal has been exhaustive for me, and I can only imagine what my sister and her fiancé have been going through and how tired they must be. Instead of them both being there 24/7, they've taken to taking turns at Jennal's bedside. If Jennal is returned to her loving, nurturing home, then both of Jennal's parents (and other family) can be by her side to aide in her recovery.

[UPDATED: 7 August 2009 12:00pm] Jennal has returned home very late last night (Thursday night). Her fever still remains but she is in much better spirits. She has laughed and is eating much better. Hopefully her road to recovery will now be much quicker and less painful on my wonderful, loving niece!

Links to all posts in Jennal's Hemispherectomy series: