And back to giggles

[caption id="attachment_2419" align="alignright" width="300" caption="Ellie on the beach in Florida."][/caption]

Last night Ellie was so loud that we (and when I say "we" I mean Thom who is on night shift and Ellie) were moved at 2:30 am to our own private room!!  So much space I hardly know what to do with  myself and normal talking voices.  It was an exciting night, Ellie's sodium jumped up to 170 (not her all time high which stands at 172, again normal is between 135-145).  

This morning when I came in everything I said and everything Ben did caused Ellie to have the giggles.  Made me feel like I was a comedian.  Now Ellie is sitting on the sofa tit tatting with Brittany and peeling crayons.

another sleepy day

Ellie was sleepy again today.  Our car has the red "check engine" light on, so a big thanks to our neighbor, Chris for a ride to the hospital.  AND for putting out our trash can on trash day.  Just could not leave Ellie in the room alone to race home and switch with Thom.  Especially after the time she kept calling for me when I was out of the room for only a few minutes.  That would be a LONG 40 minutes for her.   Ellie's sodium level has continued to be up and down all day, but her diabetes insipidus (dropping her water) seems to be slowing down now. 

The floor is once again full, so we have a roommate.  Apparently their daughter was injured severly in a skiing accident, so they are all going through the shock and drama of such a sudden, unexepected event occuring in their lives.  She has lots of visitors but no room in her small section to accomodate them.  I am working to get us separate rooms for everyone's comfort.  Just overheard that there are no rooms available tonight on the floor.    I totally feel petty in the grand scheme of things, but really for crying out loud!

How low can you go?

[caption id="attachment_2409" align="alignleft" width="300" caption="Could not resist re-running this Ben photo."][/caption]

Ellie's salt suddenly dropped down to 125 last night (135-145 normal range).  Thom said they were playing a game called, "How low can the salt go?"  Now she is back up to 147.  Calcium and potassium have started going up for her, but we don't want it to go up too high because that can cause a whole other set of problems (muscle twitching, heart problems, constipation).   She is still extremely tired, barely able to keep her eyes open and complaining of headaches.  I suppose her body is working pretty hard right now to regulate things.  Dr. Iskandar (neurosurgeon) wanted to try to get her up and around and in her pjs as soon as possible.  Sort of reminded me of that scene in Dirty Rotten Scoundrels where one of the guys is yelling at Steve Martin in a wheel chair, to just get up and walk!  Come on, you can do it, just walk!!  Particularly when Ellie can't even keep her eyes open right now.

[caption id="attachment_2410" align="alignright" width="300" caption="Adorable Juna and her mom at our dinosaur party."][/caption]

A great big thanks to Lindsey and Gerald and Juna for watching Ben a couple of nights this week so he didn't have to traverse back and forth to the hospital.  Ben loves Juna, their daughter so much that he is hoping our baby will look just like her.  While I agree that would be highly enjoyable because that little Juna is just adorable, I tell Ben that it is more likely that our baby will look like Ellie and/or himself.  A big thanks to Jana for the hot dish, we are super excited to try it, our very first official upper midwest dish!  We've heard rumors of hot dishes but never experienced one ourselves.  Oh and I forgot to thank Cynthia for the visit this week with Ellie and the yummy bagels.  You still rock (I wrote a blog about how she rocks previously.)  And thanks to Brittany for letting me talk about  fluffy pancakes (my favorites) vs. crepe like pancakes (Thom's favorites)  for about 5 minutes and authentically being interested in the topic.  How many friends will do that for you?

Oh Those Crazy Hospital Moments vs a Moment of Peace

Today I was in the family kitchen heating up my lunch.  I noticed the bright pink labels used to label food hanging on the refrigerator door had been written on.  When you leave something in the fridge, you are supposed to put your name and date on a label and stick it on your food.  Well someone had written in all caps "DO NOT EAT MY YOGURT IT IS MARKED AS MINE AND SHOULD NOT BE EATEN BY ANYONE BUT ME."  Or something to that effect.  What I loved about the sign was how raw and real it was, knowing how, particularly at the hospital where you can feel oh so crazy about oh so many things.  And then I thought of how typically when you have a crazy moment, you can walk away and leave it behind.  BUT if you hang a sign on the fridge for all to see, you are going to re-witness your crazy moment every single time you are in the kitchen. 

This afternoon, physical therapy and occupational therapy stopped by to help Ellie move around a bit and gain some of her strength back.  They asked what we would like them to work on while Ellie is in the hospital.  We had Ellie sitting on the sofa for about 3 hours this afternoon because apparently if you stay laying down too long you can develop pnemonia (who knew?)  Before that, a wound care specialist stopped by to check and see how Ellie's wounds from surgery were healing (from the clamp that holds her head steady during surgery.) 

Ben spent the morning at Tyler's Place (sibling care at the hospital).  When I picked Ben up, Jennifer the child life worker, told me how impressed she was with Ben, his creativity, his attention span, and his ability to help clean up.  Again, I have to reiterate that anyone who praises my children I am pretty much in love with.  Then today was the day for his playdate with Izzy.  The day he has been anticipating all week long.  He had so much fun going to Bounce U (a play place with all those big blow up thingys) and then for ice cream.  When he got home Thom thought maybe Izzy & Leslie had given Ben coffee because he was so so super excited about his day that he could not sit still.  Thom was going to try the magic of videos to restore calm to his (I think more Thom than Ben) world. 

So this afternoon, I just had this moment, where it felt totally peaceful as if everything were taken care of.  No worries.  Knowing that anything that needed to be addressed will be addressed even with Ellie.  It was wonderful and expansive and I wanted to live there for awhile.

Not quite so sleepy or perky

The MRI from yesterday looked good, no changes.  And her heart rate has been between the 70s and 80s (80-120 is normal).  Because Ellie was running a slight fever, Dr. Iskandar was concerned that perhaps Ellie was fighting an infection.  All of her tests checking for that have come back negative, however.   She is not running a fever now.  Apparently running a fever can be a reaction to changes in the brain.  And all of the sudden water dropping (diabetes insipidus) can also be a reaction to blood clots forming and being reabsorbed.   One of the endocriniolgists (Dr. Reim) said that it is a bit unusual for someone to have both cerebral salt wasting (dropping salt) and diabetes insipidus at the same time.  Typically when someone has diabetes insipidus, their salt goes way up as the water in their body goes down.  For Ellie, however, when her water goes down, her salt also goes down.  Fortunately, we are keeping a close eye on it and both are pretty easy to treat.  Although because she keeps changing what she is doing (dropping more water) it is a bit challenging to keep track of right now.  She is not quite back to herself as far as being jilled, just mostly lying in bed staring or sleeping.  That's the latest. 

Have I mentioned what a superb endocrine team we have?  I think I mentioned how one of the endocrinologists (Dr. Reim) said they would be discussing Ellie at their holiday party.  The whole team is just so informed and invested in her, it's impressive.  Whichever endocrinologist walks into our room, I know that they will already be up to speed.  Very greatful to have them on our team.

Sleepy

Just a plain old update blog on Ellie, nothing too fancy or entertaining (maybe next time)...

Ellie ran a slight fever yesterday and today and there was a bit of concern that maybe she had an infection.  There was talk of tapping her shunt to make sure it was still functioning last night (that means trying to draw fluids from it from the outside of the head to see if it is still operating).  Today she is super sleepy, unable to stay awake for crayon peeling or a conversation.  We are getting ready to do an MRI, because what the hay, we're here.  In other related news, calcium and potassium are still low, but sodium is back in the normal range (yeah!)  Her heart rate continues to be in the 60s-70s range.  She is not dropping as much fluids as she was yesterday.  Well send another update when we are done w/ MRI and have any word of the results.  Oh, also, just fyi, for those interested (amy) I put a less confusing definition of diabetes insipidus from another website on my previous blog.

A definition

So my great, lovely and curious friend, Amy wondered what"dropping water" meant.  The technical term is diabetes insipidus.  The website www.diabetesinsipidus.org (who knew there was an entire website for it?) has this to say, " *Diabetes Insipidus (DI) is a disorder in which there is an abnormal increase in urine output, fluid intake and often thirst....

*Diabetes Insipidus is not the same as diabetes mellitus ("sugar" diabetes).   Diabetes Insipidus resembles diabetes mellitus because the symptoms of both diseases are increased urination and thirst.  However, in every other respect, including the causes and treatment of the disorders, the diseases are completely unrelated.   Sometimes diabetes insipidus is referred to as "water" diabetes to distinguish it from the more common diabetes mellitus or "sugar" diabetes.

*Diabetes Insipidus is divided into four types, each of which has a different cause and must be treated differently.  The most common type of DI is caused by a lack of vasopressin, a hormone that normally acts upon the kidney to reduce urine output by increasing the concentration of the urine.  This type of DI is usually due to the destruction of the back or "posterior" part of the pituitary gland where vasopressin is normally produced.  Hence, it is commonly called pituitary DI. "  As some of you may recall, after Ellie's resection in April 2008, her hypothalamus was no longer communicating with her pituitary glad, which is probably why her body is not producing vasopressin.  Fortunately for us, Ellie has no thirst so we can completely control (like a mad scientist) her fluid intake which in turn can help us more easily control her water/salt balance (or imbalance for that matter). Hope this clear things up, it certainly enlightened me on the subject!

On a related note, Ellie's sodium suddenly shot up to 156 (normal is between 135-145). When the nurse turned off the sodium/water (saline) mixture we had been giving her, her heart rate suddenly shot up from 70 to 135.  It was one exciting moment as her monitor started beeping that her heart rate was too high.  The nurse explained that Ellie's potassium and calcium are both low right now so that may cause all of the heart rate craziness (not a technical term).    And if you have theories of your own, feel free to share.

Drop drop drop drop

So Ellie has been dropping more water today.  Each hour she has dropped a little bit more.  It's perplexing to the doctors.  The resident on the floor (who is apparently new) seemed reluctant to call Endocrine.  I told him, "Oh yeah, call 'em, they talk about Ellie at their holiday parties."  No move yet.  And Ellie's heart rate has started inching up into the 80s occasionally (like when I gave her the box of crayons Grandma sent.)  That's the update here at 4:30 pm.

Oh for crying out loud!

After the MRI yesterday, Dr. Iskandar (neurosurgeon extraordinaire)  told Thom that he wished he had gotten more out, again.  But we are not going back in for a 3rd shot.  Dr. Iskandar did say that he thought Ellie was doing amazingly well after all she has been through in the last week.   According to Thom, Ellie was asking to peel crayons this morning at 4am, so kinda "back to baseline but with turban". 

We are doing an EKG right now because Ellie's heart rate continues to be low, although not as low as it was a few days ago (she is now in the 70s vs. being in the 50s a few days ago normal is between 80-120).  I suspect they are checking it because her blood pressure was a bit high yesterday after surgery.  After her MRI on Monday, the nurse told me that if Ellie were in the ER she would be considered to be in cardiac arrest by her heart rate alone.  But because she was in the hospital and doing fine, it was not considered a problem.  Might have been better for me to actually not know that and here I am telling you, how inconsiderate is that?  Just trying to keep the drama alive here. 

Also, word on the street is that we may be moved to another room, as soon as one becomes available, hopefully today.  This little experiment has shown that perhaps 2 brain surgery patients in the same room is not the best plan.  Because we need this room to be super quiet, Ben has been going to Tyler's place a couple of hours a day.  It is a playroom for siblings of patients.  Ben loves it there and when Thom went to pick him up yesterday, Ben asked him to come back in half an hour because he had just started a new project.  Ellie's classmate, incredible Izzy, asked Ben over for a playdate and everyday Ben asks me if it is the day to see Izzy.

A huge thanks to Janna, Thom's friend/co-worker who set up meals for us.  And the amazing thing is the meals that she has arranged have been perfectly coordinated on the nights when we do not have a meal served at the hospital (there are free family meals served approximately every other day) .  On Monday night (was it Monday?  I'm on hospital time so a bit discombobulated), someone dropped off veggie chili, homemade zucchini bread, ice cream and hot fudge.  Total delicious feast and so nice to come home to, rather than trying to figure out dinner from the hospital.  Then, my aunt Suzanne sent us some yummy English muffins made in Kansas City.  And THEN Ellie's occupational therapist at school sent us a Panera Bread Company gift card because Panera is close to the hospital.  I say all this not only to say, "Wow!  Thanks!!"  But to let everyone know that we are being well fed.   The very first time Ellie was in the hospital that was one of my sister's greatest concerns, that I was not gettin enough to eat.

SJF

3pm--Just informed that they are closing up now, which may take an hour to an hour and a half. 

Yesterday I was feeling a bit weepy and sad.  OK a LOT weepy and sad about Ellie going back to surgery today.  Just was not looking forward to another recovery period from all that.  And the stress to her of going through it all again when she has barely recovered from the last one.  One of the neurosurgery residents came to have me sign the consent form.  I immediately began weeping to which he immediately became highly uncomfortable.  He sort of looked at me and stammered, "It's the same procedure, same risks..."  Not knowing exactly what to say or do in the midst of that much emotion.  Plus, I was trying to not completely lose it in front of Ellie who was not aware of the events awaiting her.  When I told Thom, he said the resident was probably thinking, "If that form gets wet, I'll have to re-do the whole thing!"  Then the neurosurgeon came and talked to me and told me that he just really felt that he did not finish after viewing the MRI.  Plus he felt it would be much easier to go back in NOW before scar tissue forms, before the bones reset, etc.  (that is the part I had to tune out a bit because I did not want to hear all the details of surgery.  Egads.)

There I was feeling sorta gloomy when Ellie's teachers from last year arrived, Ms. Mack & Ms. Zwart.  Totally brightened my day.  The way they talk to Ellie filled with such respect, an easy flow happens.  We all stood around Ellie's bed and never once did Ellie say she felt excluded because the whole thing was about visiting with Ellie.  Ms. Zwart brought Ellie a super soft bear which she named  "Cuddly McCuddleson" plus a batch of chocolate chip cookies plus a box of crayons.  Ellie just kept saying during their visit, "I am SJF, so joy filled right now."     A great big thanks to both of them for their skill at not just including Ellie but really appreciating  her.  Then to top it off, Brittany came and spent several hours with us. 

At 4am the PICU suddenly became full and we were moved into a double room, which means a much smaller room with another family.  We didn't even realize they had such an arrangement in this hospital.  Although when I feel a bit grumpy about the cramped quarters and awkwardness, I recall our stay in the PICU in Chicago and it was much much smaller.  A wide open space with six curtains filled with children, no room at all for stuff.  So I suppose, we've seen worse.   Should be an interesting night.  Ben has been scoping out different rooms on the floor where he would like Ellie to stay "next time", so maybe we'll get moved to one of those rooms. 

Well, Dr. Iskandar (neurosurgeon extraordinaire) just came in to say he was done and Ellie is going for an MRI rather than having to re-sedate her tomorrow.  He felt good that everything had gone well.

Gearing up for another big (or little) day

[caption id="attachment_2299" align="alignright" width="300" caption="Ellie with Izzy besdie her on class fieldtrip."][/caption]

Tomorrow is the day (again).  Sort of anti-climactic doing it once a week.  Takes some of the drama out of brain surgery if you do it once a week.  Anyway, heart rate is a bit better today, she is hanging at 65-70 today.  We seem to have stabilized the salt wasting/water dropping giving her back whatever she is dropping.  One of the endocrinologists, Dr. Reid, said that she was pretty confident that all of that is a side effect of surgery and will subside.   We are getting ready for another MRI this afternoon to see how things look after some of the swelling has subsided. 

A big thanks to Leslie and Izzy for visiting yesterday.  It was like a party when they showed up right after Brittany arrived.   We should be going down soon for a scan, so I'd best sign off for now...

LMFT

[caption id="attachment_2112" align="alignright" width="300" caption="Now she's wearing a different kind of "headband"..."][/caption]

We have been able to give Ellie back the sodium and water so here sodium level has started coming back up.  Her heart rate has been hanging around in the mid-60's today, as I said yesterday we are shooting for the normal range of 80-120.  Because of the new addition of the salt wasting/water dropping, there is no talk of us going off PICU status.  But that can change pretty quickly, too.  Gotta get back to reading, and have LMFT (lots more fun times).

Also, a great big thanks to Janna, a co-worker/friend of Thom's who brought over some deliciously scrumptious veggie ravioli casserole and bread sticks last night.  We probably ate half of it last night it was so good.  And it was just in time as I was getting to the point of starting to dig some mystery items out of the back of the freezer.  It was wonderful and perfectly timed!!!

Then there's Salty...

Everybody remember our friend "salty"?  So Ellie apparently is now dropping both her water and her salt.  We will be kept on PICU status until that can be cleared up.  Mysterious, but not that unusual after the kind of surgery she just had.

And then there's the not sleeping...

So Ellie has not had much sleep over the past 2 days (which means neither has Thom).  Yesterday she would fall asleep for 5-10 minutes then awaken ready to read again.  I did a LOT of reading.  I just sat down to blog while Ellie was asleep and she once again woke up to tell me it is time to start reading again.  She did get her head "turban" or bandage off this morning.  Let's just say they did not concern themselves with styling the hair after brain surgery.  Her heart rate has been a bit wonky this morning.  It should be in the 80 (resting) - 120 range.  Right now she is sitting at 59 and then when she falls asleep it drops below 50 which sets the alarm off, waking her up again.  Highly mysterious, everyone is keeping an eye on it but all of her other numbers look good so there seems to be no plausible explanation.  We are being stepped down to 4th floor status today which basically means we no longer need a nurse all to ourselves, there is not however a room for us to move into on the 4th floor (out of the PICU) until probably tomorrow.  That's the update for now.   Brittany is here to take over reading duty so I can go get myself some food.

More thanks....

[caption id="attachment_2301" align="alignright" width="300" caption="The love between Brittany and Ellie"][/caption]

Yet another dedication page, because jeez louise we have a lot of fabulous friends!

Thank you to Esther for skipping out of a meeting to be with us and for getting us in good with the anesthesiologists (ha!)  For the delumptious chocolates (helped me survive today when I started to lose that loving feeling.)  And for the huge bag of crayons.  Like I said before, because Esther knows almost my entire family, when she is around, I feel as if my family is that much closer to me in some strange way. 

Thank you to Ms. Pettit, one of Ellie's teachers who stopped by yesterday to see Ellie.  Not only did I have a fabulous time visiting with her (Ellie was still sleeping off 3 days worth of sedation).  I sort of had one of those moments where I could not stop talking and she kept trying to leave the room.  I think maybe at one point she thought I might actually follow her out and keep up the conversation.  One of those, "AAGH I've been alone all day and now I cannot stop talking..."  This is when I imagine other people thinking, "Oh so that's where Ellie gets her talkativeness..."  She also brought 2 boxes of crayons, some of Ellie's favorite school story books, and a Sid the Science kid video (Ellie's favorite show). 

Thank you to Brittany for 3 big boxes of crayons and for her calming, fun presence every day.  Oh and a "chill mix" cd for hospital listening enjoyment.  I feel as hip as the kids listening to it.  That doesn't happen as often as I inch towards 40. 

Thank you to Cynthia for a humoungous box of crayons plus a T-Rex with a jaunty bow for Ben plus walking across a frozen lake to get here.  (What dinosaur could not use a jaunty bow?)

To our wonderful neighbor, linZ for hanging out with Ben this afternoon so Thom could get some rest (it was a long night of not much sleep for him after all that sedation sleep yesterday.) 

Thank you all for your love and support throughout, we can truly feel the love whether you are close by or on another continent. 

Did not talk with Dr. Iskandar the neurosurgeon today so no news on that front.)

Just can't leave her alone...

[caption id="attachment_2300" align="alignright" width="200" caption="Ellie smiley in class last year."][/caption]

Dr. Iskandar would like to go back in for more resection on Tuesday, February 23.  He was not satisfied with the way the MRI looked and is confident he could remove more without any complications.  He felt that last Tuesday allowed him to sort of push the limits to see how far he could go without damage.  He still needs to talk with us to discuss all the details.  Hard to wrap our brains around doing this all again and so soon.

Surgery mergery whatever

[caption id="attachment_2359" align="alignright" width="300" caption="Ben as a scary lion roaring."][/caption]

Ellie is back from her procedure (seriously I can hardly call it "surgery" after Tuesday).  I requested that instead of talking loudly to wake her from sedation that we let her sleep because girlfriend has had one hard week and why not let her rest if she is comfortable? 

If someone loves my children I just immediately have to love them back or at the veryleast think highly of them  for having extremely good taste.  Our friend Lainie, who has 2 children under the age of 5 herself, offered to take Ben for a few hours today.  She coached her children into helping Ben feel comfortable in their house as he was a bit nervous about going on a playdate by himself.  So I just have to say a great big huge thank you to Lainie for not only taking Ben (that's a brave woman right there) but for also bringing donuts and cookies and lemon bars (this baby LOVES lemon!) I mean seriously, that is way above and beyond.  Not only that, but she picked him up so he could ride in a mini-van.

And thank you again to Esther for bringing crayons and a ball and chocolates today for us.  And to Ms. Pettit for staying and tit tatting (talk + chit chatting) with me even though Ellie continued to snooze.

She's back, well not literally

Ellie is doing so much better today.   Right now she is having the port placed, a small surgical procedure (NOT brain surgery, that joke just never gets old for me).  She should be back up any minute.  Before she went down, she told the anesthesiologists that she was feeling marvelice (marvelous + nice).  They told her that they were going to do everything in their power to make her feel comfortable, even turning off the sun if should happen to be shining in her eyes in a bothersome way.  Even though she looks like she was in some big ruckus--swollen eyes, red nose, big bandage on head, lots and lots and lots of tubes emanating from her--she is more back to her jilled self.

And here is what Ben said...

[caption id="attachment_2306" align="alignright" width="300" caption="Oh that Ben!"][/caption]

Earlier today our great friend, Esther came by for a visit.  Ben was here and super excited to see Esther who was in a much better mood than Thom or myself or Ellie.  So Ben just showered Esther with his attention.  At one point Esther laughed at something Ben said or did, and Ben responded by saying, "Oh, Esther, you have an amazing laugh!"  It was as if Ben was either A) trying to pick Esther up or B) trying to convince Esther to take him home and away from this crazy hospital family he has been with this week.

And here's what the MRI said...

Just looked at the MRI with theneurosurgeon (Dr. Iskandar).  He pulled up the shots on the computer and sort of had this astonished look like, "What the???"  Because it did not look like he had actually spent his entire working day yesterday resecting tumor.  He kept flipping through MRI shots to try to find ONE that would show the work he had accomplished.  He concluded that it could possibly be blood (which typically does not show up on an MRI) and leftover tumor that is on the MRI scan.  Or maybe the bulk that he removed from the tumor just is not showing up in the views on the screen because the screen is 2D instead of 3D (and what the heck is up with 4D ultrasounds?)  Dr. Iskandar mentioned that he could go back in and remove more tumor if necessary because now that he has tested the limits he knows how close he can get to the optic nerve without impacting her eyesight. (which made me go, "What the??")  He confided (don't tell anyone) that Ellie was one of his most complicated cases.  Not sure that was the award I was going for this year, but hey guess you gotta take what you can get.  He recommended we do another MRI in a few months to see if what was showing up was actually blood or still tumor (in which case he might want to go back in for more.) 

Ellie is feeling a bit better.  Not her normal, talkative self, but not complaining of pain as much as she was.  She even suddenly sat up in bed at the prospect of breaking and peeling crayons after her MRI.  Astounded we were at this sudden movement. 

Thank you to brilliant Brittany for the yummy delicious falafel sandwich (my favorite pregnancy sandwich) and for giving me a reading break this evening.  Yes, Brittany, who came every day last time Ellie was in the hospital to visit even though she was working 2 jobs.  She just rocks.

Oh yeah and here is what the neurosurgeon said...

That sounds like the start of a joke, doesn't it?  So last night the neurosurgeon seemed pleased with how much tumor he was able to remove.  He explained that when the tumors were being removed the cysts that had been getting bigger automatically dissolved on their own.  (Somehow they were formed because of the tumors sort of squeezed things together making little fluid filled pockets if that makes any sense.)  Because he had been more aggressive, he was a bit concerned that he had damaged her eyesight.  There is also a possibility that she will have movement tremors in her body.  It appears that her vision is intact but she has had tremors throughout the night.  I am hoping that these will resolve themselves (no one has said this is the case but I can still dream). 

Right now she is having an MRI for more information on how the surgery went.  Tomorrow she will have another surgical procedure to have her port put in for chemotherapy.  Her calendar is full. 

A couple more big thank yous.  Thank you to Cynthia for being the best blog commenter ever.  And for bringing us a lovely, yummy dinner yesterday and hanging out with us.  Thank you to Chris & Kathy our fabulous neighbors for coming over on Monday night to check in before surgery and for shoveling our sidewalk yesterday (we have the cleanest one on our side of the street now, we may actually win some award.)  To Ellie's teacher, nurse, and principal, thanks for all the support on so many levels you have given us.  To Betsy C. & Amy for their love-filled e-mails over the last couple of days.  I suddenly feel like this is a dedication page or whatever that is called where you thank people who helped you write a back.  I'll keep updating as I get more information.  Love to all of you!

Quite a headache

So apparently 10 hours of brain surgery will give you quite a headache.  And for some strange, as yet unknown reason, a sore nose.  Ellie is pretty uncomfortable today.  Too uncomfortable to smile.  Or laugh.  Or talk.  Not the usual jilled girl that we are all used to and love.  She just seems so vulnerable to me right now.  Brings back memories of all the other times she has been here.  I feel like a mother lion (or Carol Burnett in that episode of Mad About You) wanting desperately to protect my sweet girl but not knowing how.  Sort of that panicky feeling, "I've got to DO something!!"  Or "I changed my mind, I don't want to go through with this!!"  And then writing a blog instead.  Because ultimately, there is nothing to protect her from.  And in the end, I know that Ellie will feel better soon and so will I.

Closing up

6:30pm--Now in the process of closing up, which apparently takes about as long as set-up (again best not to think too long and hard on that).  Probably will not be able to blog after recovery as I will be busy with Ellie.  Hope she is as "jilled" as she was with Thom & Brittany in post-op this morning.

Just hanging out here with the cleaning people...

Still no word on the end yet.  Getting late.  Getting hungry.  I keep imagining that Dr. Iskandar is just so close to finishing up at this point and that is what is taking so long.  Just wanted to let you all know...

No end time yet

I am officially the last person here now it seems anyway.  When I walk down the halls it is pretty quiet.  A nurse came about an hour ago to say that everything is going well but there is not an estimated end time.  We may head straight to the PICU (pediatric intensive care unit) afterwards rather than going through recovery here. 

Can I just use this as an opportunity to THANK Brittany for hauling herself here at early o'clock to be with Ellie before surgery.   A great big thanks to Jennifer for bringing us lunch and helping us think of funny boy's names.  And another great big thanks to Karly for the entertainment, conversation & yummy treats from Lazy Jane's.   To my mom for her international phone call, my sister for her marvelous text, and to all of you who have sent e-mails throughout the day with your best wishes & prayers & even fairy dust!  (Oh and of course the homemade jokes too!)  You made this somewhat challenging day that much easier for all of us.

The waiting game

So now we're waiting....and waiting...and waiting....

Hardly even a big deal

Ellie went in for surgery at around 8am.  She was in high spirits, telling everyone she was "jilled".  Most upsetting was having to stop peeling her crayons to go into surgery.  Thom & I were discussing how even this major brain surgery was hardly even a bump in the road for her.  The things that used to be the most challenging--not being able to eat or drink prior to surgery are no longer an issue (there's a bonus for no appetite/thirst!) 

Was just informed that surgery actually just officially began (9:45 am).  As you can imagine (although don't if it makes you feel funny), it takes a while to prep for surgery.