Okay, I'm going to start today's update with John's update:
Erik and I both left the hospital last night (friday) at about 9pm. Uma had fallen asleep and seemed ok. There was a nurse named John from Nigeria I think who assured me he would call me when she was taken down for the shunt revision.
We had waited there all day for a bed in the OR to open up. It was, again, one of those days and nights where you just had no idea what was going to happen to Uma and you had absoulutely no control over any of it at all. You just wait, knowing that this is a fairly time-sensitive thing. Why else would the neurosurgeon at the rehab facility have looked at the ct scans and then instructed everyone to immediately begin expediting Uma's transfer? ....so you wait and pray, or try to pray. It's frustrating knowing that we lost at least 2 weeks in NY around this whole shunt issue and then find out, on the way out the door, that we need to revise it. That is when your sense of no control begins to really crush your soul. The pain from this is just hideous - there she is, doing everything you could ask a human to do to stay alive,and you realize she's NOT getting the help that was promised from people who are SUPPOSED to know, SUPPOSED to help. To think that she survived that amount of bleeding (Dharshi looked at the ct scan from Jan. 31 and said it's a miracle she's alive at all), that amount of vaso-spasm, coma, pneumonia, infection, catherterisation, triple H therapy, drugs, surgeries, procedures, confusion, inactivity, poking, prodding, commands, loud noises and voices every day, a bad shunt, really bad hydorcephalus and STILL managed to mouth words, smile at people, laugh at jokes, cry at photographs and news of people's love, move her bad leg and foot and hand, sit in a chair, write her name, roll a wheelchair, and WALK - even if it was just astep or two.....and then to just be waiting with her in ANOTHER hospital setting (wires attached to monitors, alarm bells sounding off, respirators etc) was just....at times like that the question of "why her?" can easily pop back into your head, and your sense of the blessings involved can just slip away.
On the way home I called my dad and, among many other things, we discussed what God, prayer, sacrifice, acceptance, and love all have to do with one another. I was thinking about how many people's lives have been so positively changed by Uma's illness and ourwritings etc. The latest evidence of this was when a complete stranger who happened to be a Physician Graduate student saw Uma in bed at the CMA (closely monitored area - a step down from Intensive Care Unit). He came up to me in the hallway and said, "My wife is an intense blog follower and has been religiously following this on the web......I'm glad you made it out here (to California)" And today Erik showed me photographs of 5 school classes somewhere who had all taken class pictures with painted signs saying things like, "get well uma!" and "we're praying for you uma" One picture had one of the little students posed in a palm-together prayer position. Add to this the fund raiser, the email and calls I and many others have made and received, the way the nurses and pastoral counselor at St. Vincent's reacted to her, the thousands of people praying for her everyday, and the changes and responses in people lives is truly amazing. This is truly a very, very large action of love on the part of the most widely varying group of people I can imagine.
This, coupled with my own experience of a renewed sense of love and prayer and connection is an amazing blessing. People talk about blessings in disguise pheonix-like experiences, or unimagineably powerful lessons about life that are learned as your heart breaks from them. And I would agree with all of them.....but last night I just had to pray, "ENOUGH! Enough "blessings" disguise or otherwise. Enough lessons for other people. Let's have a blessing for HER!! Let's get her some definitive medical help so that we can all have MORE lessons of love and life and the divine when she has been rehabilitated!" Yes....I yelled at God. But the way I see it, my God wants a relationship with me and that means all of me - at my best, my worst, and in my deep frustration....and there's a difference between being angry and being frustrated.....I was telling this stuff to my dad over the phone and he replied, "You'd better get ready for a phone call...."
At 4 am (on Saturday morning) John called me and told me they were taking her down for the shunt. I got there at about 5:35 and about 10 minutes later, the anesthesiologist wheeled her past me. I asked how everything went and she said,"fine. no problems at all" Subesequent conversations with the doctors informed me that the shunt revision went well and that csf was flowing well now and that the previous shunt was fully blocked. I also got them to agree to another ct scan to verify the position of the shunt before transferring her back to rehab.
So, if all goes well with the ct scan tomorrow she will, most likely be back at rehab on monday.
And......she is doing well. She's not on a ventilator,her right arm and hand are about 90 per cent more relaxed than I've seen in weeks, she picked up a magazine with her left hand to look at it, and she's not agitated, not constantly moving her leg, and she's not leaning her head to the right tonight. But, most important to me, she looks different. She looks more calm, more focused, her pupils are less dilated in my opinion and her smile is more even.
She got visited today by Wayne (who had his hair cut today and had "UMA" carved in hair on the back of his head), Aida, Lauren, Ann and Keith and, of course, me and Erik. Lots of smiles and recognitions.
We'll see what the next two days bring. I am praying hard for a clean bill of health. It's the only way to have any rehab be effective. I'll be back at the hospital tomorrow at about 9 to keep pressing the ct scan and visit her. There's no internet there or anywhere around there so I'm back to the late-nite writes.
all my love,
And here's a little backstory, an email I sent out on Friday night:
I just wanted to piggyback on John's email from tonight and give you
all a few more details about where we're at...
Basically, we spent the entire day waiting for Uma to get her new
shunt...and waiting...and waiting...and the hospital staff told us
that we were waiting for an operating room to "open up," which could
be as soon as "the next ten minutes" or as late as "tomorrow." So we
waited, and waited, and waited. Which wasn't TOO bad because we were
able to sit with Uma, to be with Uma, to talk to her, to hang out with
her. Our friend Sissy Boyd came by, and it was great to have her
there, and Uma really responded to Sissy, and it was a good day. Uma
was doing good.
But then at about 7pm they took her to the ICU (and they wouldn't tell
us why they were moving her--there was no change in her condition--I
honestly think the only reason they moved her was because they were
shuffling patients around for some bed situation, and they shuffled
Uma to the ICU) and they told us that we couldn't go into the ICU with
Uma because there's no visiting from 6:30pm to 8:30pm in the ICU. So
we waited to see her again...and then we got to see her at 8:30, but
the ICU limits visiting to FIVE MINUTES every hour. So we could only
be in there with her for five minutes. And she seemed kind of freaked
out and scared, like, "why am I in this new room with new nurses?
what's going on?" At least, that's how I read her expression. So John
and I told her, again, that she was going to get a brand new awesome
shunt and that we just had to be patient until the procedure and she
would be back at rehab soon, and to rest--to sleep--and we would be
back to see her soon.
So, anyway, that's where we're at. We're waiting, and Uma's in a new,
random ICU for the night. Which is tough and frustrating because we
want to be with her and we want her to get her shunt fixed both
beautifully and SOON.
So...we have been waiting, we are waiting, we continue to wait. And while we
wait, we need to pray that an operating room "opens up" for Uma first
thing in the morning, we need to pray that the shunt procedure is
awesome and perfect, and we need to pray that Uma has strength tonight
and that she can relax and sleep and not be afraid while SHE waits in
that new bed, in that new ICU.
Thank you and love,
So now it's Sunday morning and Uma's had her shunt procedure. The doctors are confident that it went well (and that the previous shunt wasn't working AT ALL). They are going to do a CT Scan sometime today and assuming everything looks good, we should be going back to the rehab facility tomorrow. The visitors we've had the last few days have been wonderful and I know that it's meaningful for Uma to have such great contact with her friends. Thank you, and please come by to visit with Uma if you haven't yet. Just email me and I'll give you all of the details.
Okay, I'm about to leave for the hospital myself, but first I want to post a bunch of pictures.
These first few photos are from the New York waiting room. I was cleaning out my camera-phone and I don't think I've posted these photos on the blog yet.
This is Erica, Eleanor, and Eleanor's fiance Bill:
The above photo was taken on Uma's second weekend in New York. We were still enmeshed in pretty scary times. I think Eleanor is writing a letter to Uma. I've been writing emails to her because I know that one of these days she's going to be able to check her email again and it'd be nice for her to have some real emails waiting for her (instead of just spam). My aunt Jill gave me the idea after telling me that she had been emailing Uma. If you don't have Uma's email address, leave a comment here or send me a quick email and I will pass Uma's email address on to you.
This next photo is Adam:
Uma's dad Nithi calls Adam "the chocolate man" because Adam is awesome and got into the habit of bringing us hot chocolate every night. It was so nice, after a long day in the waiting room, to get a hot chocolate pick-me-up every night around 6pm. We all got completely addicted. (Okay, I was already a hot chocolate addict, but still, now I'm an even worse addict.)
Sezin sent me an email last night with a link to an article about how scientists have discovered that cocoa beans improve brain flow. Total coincidence that we've all been consuming MASS AMOUNTS of cocoa beans. So we need to get Uma addicted too, and I'm going to ask them if we can start giving her a little bit of cocoa every day.
This next photo is Jason and Nithi:
It's kind of a strange photo, yet? (Okay, um, I'm rereading this and just saw that I wrote the word "yet" instead of "yes," and I totally prefer the oddity of "it's kind of a strange photo, yet?" to the generic and mundane "it's kind of a strange photo, yes.") Waiting, waiting, waiting. Jason got married yesterday! (Congratulations Jason!!!) (He didn't get married to Nithi, that's not what they were waiting for.) (Obviously they were in the waiting room waiting for Uma.) (Gosh, this paragraph doesn't make much sense.)
Okay, moving on, this next photo is of John and me:
Eleanor took the above photo. I don't have any idea what we're looking at on our phones, but whatever it is, we're certainly FASCINATED by it~! (I just asked Eleanor if she remembered what we were looking at when she took this photo and she thinks that we're comparing photos of Nithi we both took with our phones.)
Okay, this next photo is another photo of waiting taking place in the waiting room.
That's Sladiee sitting to my right, talking on her cell phone. Sladiee's mom Linda had a brain aneurysm about a week after Uma did and I've been saying lots of prayers for Linda and thinking of their whole family and wondering how they're doing and hoping that they're staying strong and that Linda is making improvements. I called St. Vincent's hospital yesterday to find out how Linda was doing and all they would tell me at the reception desk was that she's still in the ICU. So say a prayer for Linda when you can. She's a good mom and she's got two amazing kids. (Sladiee and Elman--say a prayer for them too, I hope they're doing okay.) (I miss them, they're good peeps.)
This next group of photos is of Uma being moved to the rehab facility:
The above photo is of Uma on the Air Ambulance. John sent this photo to my cell phone just as they were about to take flight. Look at how tiny the plane is! (I would like to take a moment here to send out another thank you to all of the amazing, generous people who contributed to The Uma Fund and made it possible for us to get an air ambulance in the first place.) (Thank you!)
Marie and I were both waiting for Uma at the rehab facility when they arrived. (Uma's aunt and uncle, Prakash and Nava, were waiting there too, but we were waiting in different locations and we didn't all find each other until after Uma arrived.) Marie and I were so excited to see Uma again (it had been about a week and half or so since either of us had seen her in New York) and every time one of our phones would ring, we'd jump around and be like, "they're here!" and then look at the phone and see that it was someone else calling, until finally John sent me a text message with six awesome letters: "landed!" And then Marie and I started watching the door, like, so excited that any second Uma would be coming through it, and as we were watching the door all eagle-eyed, we saw the ambulance drive past and we ran outside and that's how we got to be there to take these photos of her literal arrival.
These Air Ambulance medics were the nicest people.
And how much do you love their outfits? Seriously, I want a cool Air Ambulance jumpsuit of my own.
The above photo was taken just after Uma had been brought into her rehab room, John was thanking the Air Ambulance medics. And then the rehab nurse started getting Uma all situated in her rehab bed:
The next two photos were taken at the county hospital while we were waiting for the shunt procedure:
(Don't you love how Uma has her hand rested on John's back? John sat down and put his head down for a moment and then Uma just put her hand up there, comforting him. It was a nice moment to see.)
Here's a much needed pre-shunt nap:
Here's a much needed post-shunt nap:
And here's another much needed post-shunt nap:
Awesome, rockstar visitors: (I will add captions to these photos later, I want to get on the road to the hospital right now.) (Okay, now I'm back adding captions.)
This first photo is of Uma with Sissy Boyd.
When Sissy first sat down with Uma, Sissy got a bit emotional and shed a few tears and then Uma's face just filled with emotion and she cried with Sissy for a moment. I would say it was about thirty seconds of pure release. Uma needed to let it out, and she did, and then Sissy started talking to Uma and listened. It's hard to see Uma cry, but it's GOOD too--because it's another indication of the fact that she's aware of what's going on.
This next photo is Aida and John. Uma was asleep when Aida arrived and we were waiting for her to wake up so we could go back and hang out with her. Aida flew out to New York with me and my mom on January 31st, aka Day 1, and so the last time Aida saw Uma was when Uma was still in her coma. So it was really great for Aida to see Uma again, so awake and alert.
Okay, this next photo is of Ann Closs-Farley. I've been worried that John isn't taking engouh care of himself and I put out a call for friends to bring John lunch, and Ann and her husband Keythe volunteered to take care of his lunch needs on Saturday. They were awesome. They brought a really tasty curry dish, as well as some equally tasty japanese pineapple gummy candies, a spongebob squarepants book (that their daughter Violet wanted to read to Uma, but unfortunately childred aren't allowed in the ICU, so she'll have to wait to read the book to Uma until Uma's back at the rehab facility), a rubik's cube, and a few other assorted goodies. It kinda felt like Christmas. So nice.
And Ann had some great ideas about making Uma's room at the rehab facility feel more homey, i.e. bringing cozy sheets from home, putting up our own window curtains, things like that. And next time Ann visits, she promised Uma she would paint Uma's toenails, and Uma gave Ann a smile in response, so I think she's game.
After lunch, we got a visit from Lauren Campedelli:
It looks like Uma's sleeping in the above photo, but she was actually blinking when the photo was taken. I didn't ask her to take the photo again because I know that if I had, she would have rolled her eyes at me, and she rolls her eyes at me enough as it is.
It was so good for Uma to see so many friends. Thank you for coming, Lauren! (And everyone who has visited!)
The next three photos are of John's brother Wayne's head. More specifically, the back of his head. More specifically, The Best Haircut Ever.
Okay, and these final six pictures that I'm posting are my favorite pictures. They're from Leona, they're the photos that John mentioned in his email update above. First, some context from Leona:
"When I told my mom about Uma, she went to each class in her school to share Uma's story and ask for prayers. After hearing about her, students decided that whenever they came in contact with someone that didn't know her story they would tell it to them and ask for more prayers. If that person already heard the story they would just say "Uma" to each other as an instant prayer for the whole family. These photos were taken on the day St. James School designated "Pray for Uma Day." Masses were dedicated to her all day long, and even days later, my mom was greeted by little "Uma's" in the halls that, collectively, sounded like one long meditation."
(note: i've removed the school prayer photos at the request of someone from the school.) (But Uma saw the photos and smiled and I'm not sure that she yet comprehends completely how much love is out there for her, but hopefully something like those amazing photos helps her understand it)
The signs read:
"St. James 5th Grade Loves and Prays for Uma"
"Uma...We are praying for you...Get Well from Grade 4"
"We've been praying for you Uma...2nd grade."
"1st Grade is Praying for You! Peace and love. Have peace, Uma"
"Dear Uma, We are praying for you! Love, the Kindergarten Class at St. James."
Amazing and beautiful!