Friday, March 16, 2007

New Shunt!

Uma is getting a new shunt today (most likely in the early evening)! This is very exciting, and I'm asking all of you to hope and pray for a PERFECT SHUNT. When the New York doctors put in the first shunt, they didn't put it in far enough and therefore it's been completely ineffective (the shunt is supposed to get rid of her hydrocephalus, but her hydrocephalus has actually worsened since she got her shunt). The fact that she got a bad shunt is incredibly frustrating and sucks, but there's no point in focusing on the negative because Uma is getting a new shunt today (!) and this is awesome news. A strong shunt, a perfect shunt, a correctly placed shunt—a rockstar shunt—will pave the way for Uma to recover at a much more rapid pace.

So please keep Uma in your thoughts today (Friday). The shunt procedure will take place in the early evening. John and I will let you know how the procedure has gone as soon as we know anything. (Also, if you were planning on visiting her at the rehab facility today—Friday—please call me because she's at a different hospital for the shunt procedure. Call me and I will give
you updated visiting info.)

Today was a very busy day. Lots of things to report. Good things. Good signs.

My mom stopped by the hospital for a couple of hours and she was there for a lot of exciting therapy stuff. She wrote up an update of her own, so I'm going to let her take the reigns for a moment:

MY MOM'S UPDATE:

What an amazing and inspiring experience it was to see Uma today. I hadn't seen her since the first week she was in intensive care in New York, and she wasn't conscious at all during that time. Today, she greeted me with a smile. When I showed her a few family photos I had brought for her, those beautiful dark eyes filled with tears of recognition.

John left to take care of a number of important things, and I stayed with Uma for a couple of hours. We were alone for a while before the nurses and therapists came in, and I felt a bit awkward trying to make conversation since she couldn't respond verbally and it was hard to
tell if she was understanding everything I was saying. We looked through a photo album filled with pictures from her college days, and that seemed to make her sad so I picked up a book I had brought and read some of it to her. I don't know if she liked that, but at least it didn't make her sad. I plan to bring other things to read to her that she might like better next time I visit.

Uma was sitting in a wheelchair when I got there. It was so great to see her sitting up and wearing regular clothes instead of a hospital gown. I brought her a green cap and put it on her and she didn't take it off so I'm hoping she liked it. It certainly looked great on her, and I know it is her favorite color.

After a while, the physical therapist, Jitka (pronounced Yitka), came in and we went to the gym for therapy. She soon had Uma sitting up by herself and then standing and trying to walk. She put a brace on Uma's right leg to help steady her and Uma held onto a walker and took a few
steps. This is the first time she has even tried to walk, so it is truly amazing that she is actually doing this. It was a quiet moment, but a very big one--kind of like those first human steps on the moon that made headlines around the world. Uma didn't make headlines, but she certainly deserved them for the way she performed today.

We moved to the hallway where there is a guard rail to hold onto and she walked better there. Then she sat in her wheelchair and Jitka taught her how to use her left foot and left hand to move the chair down the hall. It was a bit of a struggle, but Uma did that, too. At one point, John, who worked so hard today to get Uma the medical care she needs, came into the hallway as Uma was trying to walk. She looked up and saw him and gave him the most beautiful smile.

When we got back to the room, the speech therapist came in and started working with her. She was obviously very tired, but she gave her attention to Joyce and went back to work. She is obviously determined to work at this, though she is clearly very frustrated.

I think Uma is very sad, perhaps even depressed, about what she is going through. No one could blame her for that. Six weeks ago she was on top of the world, and now she is facing the difficult task of learning to walk and talk all over again. Very tough stuff for anyone to deal with.

I told Uma today that she will get through this, will get her life back. That each day she will make progress, one step at a time. She responded to this with more tears. That tells me she is very much herself, but very discouraged because there seems to be such a long way to go.

She needs to believe in her own recovery, and I'm sure that will happen as she sees the progress she is making and feels all the love and support that is there for her.

I can't stop thinking about her beautiful, dark, sad eyes. I can feel her wanting to break out of her silence. Please pray for her to get her voice and her words back. She needs to be able to express herself, to get through the anger and pain and find her way back to joy. Every time John walks in the room, she gets a taste of that. I believe that is what keeps her going.

*

ERIK'S UPDATE:

I got to the rehab facility at 4pm today. Erica and her friend Peter were there, with John. Erica told me that she'd played a few games of thumb wrestling with Uma and that Uma had whooped her each time, so when I went in to see Uma, I decided to see how she'd do against MY thumb, and I honestly tried to whoop her ass—hard—but she got my thumb first, and then she wouldn't let go of it. Like, she would not let go. At all. And I couldn't get my thumb out. And she kept looking at my weak thumb and then looking back up at me with a smirk, and then back at my weak thumb. It was actually really funny—I think she wanted to show me how strong she was (and make fun of what a wimp I am) because she kept pushing down harder on my thumb with her thumb and when I finally told her "I seriously can't remove my thumb, you have to let go" she laughed and then released my weak finger. True story. She was playing with me, completely engaged. And that was a really encouraging thing to see. (A couple of hours later, I was telling John's brother Wayne about how Uma had brutalized me at thumb wrestling, and Uma smiled again at the memory—which was also encouraging, to see this sign of short-term memory retention.)

Shortly after I arrived at the hospital, one of Uma's docs (there are so many new doctors that I haven't learned all of their names yet) came in to give Uma a new trach tube. She's had the same trach for the past 30-something days, and the reason she was having such a hard time breathing yesterday is because her trach had been in there for so long and had basically gotten clogged up with lots of dried phlegm. So her air passageway was literally clogged up and if we hadn't changed the trach today, she would have run the risk of suffocating. (I'm not exaggerating: after we replaced the old trach with a new, sleeker, cleaner, cooler trach, the doc showed us the old one, and it was SERIOUSLY clogged up.) The doc asked John and I to help him out, so John gently held Uma's head, and I held her hand, while the doc did his thing. Uma seemed kind of scared—after all, she was awake to watch the doctor pulling a plastic tube out of her throat—but John and I kept saying soothing things to her and tried to distract her from what the doc was doing. After he took the old trach out, Uma started coughing and some blood came out of the hole in her neck, which was scary to see, but the doctor assured us that this was normal—when you've had a piece of plastic in your neck for so long, it's bound to irritate and chafe and cause some bleeding. Then the doctor put in the new trach (he showed us how to do it, and how to clean it), and then Uma coughed a little bit, and then she was fine.

After all of the excitement of getting a new trach, and after all of the day's therapy, Uma was understandably exhausted. We put on some Degrassi for her to chill out to (next generation, third season—the episode where Craig and Ashley are both competing in the song writing contest and Paige gets mad at Ashley for writing a song about rape when she knows nothing about it—awesome episode), and Uma fell asleep fairly quickly. John took advantage of Uma's nap by taking a nap of his own, and I sat there holding Uma's hand and watching her sleep (for about 45 minutes) and thinking about how creeped out she would be by the thought of me just sitting around watching her sleep. (Actually, Uma, I know that you'll read this email one of these days, and when you do, you can tell me for yourself: how freaking creeped out are you by the thought of me just STARING at you for such a long time?)

A little bit later, John's brother Wayne came by with hot chocolate (taking over for Adam as the "hot chocolate man," perhaps?), and a little bit later John's parents came by too, so the room was full of Ballingers and I can't imagine a room filled with better people. Ballingers are awesome people, I love Ballingers, every one of them. I can tell that Uma does too. Every time she sees John's parents, she gives them a really big smile.

A little bit later in the evening, while we were still waiting to find out whether or not the new shunt procedure was going to happen, I told Uma to cross her fingers. And she crossed them right away. Then, after we found out that the new shunt procedure WAS indeed going to happen, I told Uma that she should be excited and then she rolled her eyes at me. And then I was like, "no, you cannot give me attitude right now, this is really good news and you need to be excited too!" And then she rolled her eyes at me again, like, "whatever, dude, just bring me home already." Then I asked her: "at least, can I hold your hand while we wait for the ambulance to come get you?" And then I went to take her hand and she hit it away! Which made me SO happy because it was SO uma! Because Uma and I do NOT hold hands, we are not touchy-feely AT ALL with each other. And as soon as she batted my hand away from her, she gave me a HUGE smile that was so completely 100% Uma—like, she was totally making fun of me for being so mushy—and then I told her, "okay, fine, you're right, let's not hold hands, but you have to at least be a little bit happy about this new shunt you're going to get" and then she kinda rolled her eyes again, looked away for a second, and then looked back at me and begrudgingly gave me a little smile, as if to say "okay, fine, I'll be happy."

And then they took Uma to the new hospital to prep her for her new shunt. John went with her to the new hospital, so he's got the latest update, and so now I'll pass the baton on to him:

JOHN'S UPDATE:

hello,

today was an amazing day. not only did she walk while holding on to a rail and getting help with her right leg, but she rolled the wheelchair with her left hand and left foot. she practiced writing
again and had visitors to whom she responded with big smiles – uncle Prakash and aunt Nava, my mom and dad, Wayne, Erica and her friend, Erik and his mom, Sherry (Sherry brought me lunch - what a difference food makes)

....but also - Dr W, the neurosurgeon saw her CT scan and decided to expedite her transfer to a county facility that can provide her with a shunt revision. I just left her and they had already looked at her CT scan from Tuesday and did a needle test which showed that the shunt is not functioning. Before I left to come home they ordered another Ct and 'shunt series'. They will most probably due a shunt revision tomorrow early evening. They want to take her off her blood thinners long enough to reduce bleeding.

She definitely has hydrocephalus and an improperly placed and non-functioning shunt (thank a lot dr. h). The shunt is not really even IN the ventricle. There was never a chance that a shunt placed that way would work.

For some reason I'm not as worried as I thought I'd be. You hear things about county facilities and yet, so far, the resources they have are truly amazing. They don't worry about insurance company problems that much so they just go ahead and order whatever is needed. I don't know why I feel ok about this – I spoke at length with Dr. Dharshi tonight and she thought all of this was a good idea. I overnighted her a copy of the ct scans from ny and she was amazed at a couple of things - firstly, that Uma is alive given the amount of bleeding in her brain....second, that the shunt wasn't revised on the following day in ny.

Anyway, I'm exhausted but glad that something is being done about this and that it really didn't take that much time and that I have support of all these different doctors about her hydrocephalus.

Please call me if you want to visit her - it may not be possible tomorrow but I should know about that schedule fairly early in the morning. She may be kept at the county hospital 'till monday but, again, I'll know more about that later, most likely on Saturday.

I've just got to sleep - but I'll leave you with these two things.....pray for a GREAT SHUNT REVISION! And allow me to say that I'm so proud of her, she is a hero to me, I would do anything for her and I thank you for helping so consistently in this.

more tomorrow,

john

*

Some Uma love:


1 comment:

Ondrej C. said...

Hey there, I moved to NYC only like 6 month ago from the Czech Republic. I got my shunt in December 2005 and it's been working great since then. I wish you all the best. And may be I could even visit you sometimes? Pls. e-mail me on ocl1976@gmail.com. Best regards, Ondrej