Better and better

[caption id="attachment_1172" align="alignright" width="300" caption="This is my reaction to Ellie having breathing treatments..."][/caption]

Today Ellie is breathing a bit better and was even able to sit up in the chair earlier this morning.  It's so funny how your perspective changes when in the hospital.  When suddenly sitting up in a chair seems like a huge accomplishment.  I saw another mom in the room with her daughter who was sitting up and I wanted to give them a thumbs up.  Yeah!  Sitting up, outta bed!!  I guess it makes you appreciate all of those little things you would typically take for granted. 

Ellie is now peeling some of the crayons that Aunt Linda collected from her school district.   Occasionally, Ellie will look up at my surprised as one of the crayons is already peeled or broken.   Man oh man have those three 20 pound boxes of crayons come in handy!!! 

Breathing continues to be challenging for Ellie.  She just is not getting enough oxygen in her body on her own.  So she has a super duper nose thingy in (a calendula).  We are hopeful that by tomorrow, Ellie's breathing treatments will be moved from every 2 hours to every 4 hours.  Because now every time someone unknown enters the room, Ellie looks frightened, wondering what they have in store for her.   The breathing treatments are hard for me to watch because they are very loud and thus startling for Ellie and a mask has to be held tightly to her much swollen face.  The whole thing just reminds me of someone being drowned b/c whenever the mask comes toward her, Ellie struggles and holds her breath.  But I know that is not the most pleasant thought, so I'll have to work on creating a better feeling one.   The one that I've come up with thus far is, "I am REALLY looking forward to being finished with these treatments."  A little bit better, but not, as Ellie would say, "All the way better." 

A great big thanks to our neighbor, Chris, for hanging out with Ben while Thom switches with me at the hospital this afternoon.   Having Chris and Kathy as neighbors is like that old commercial, "And like a good neighbor, Chris and Kathy are there..." (thanks to State Farm for letting me use your diddy.)

Funny how those little things are so important...

Like breathing for example.  We are continuing to work on getting Ellie's oxygen level up.  Thom (aka Dr. Daddy) is suspecting pneumonia or possibly a collapsed lung.  None of this is that unusual for someone after surgery, laying in bed.   Right now she is resting comfortably.  Yesterday the respiratory therapist kept requesting Ellie cough, to which Ellie responded with a very slight shaking of her head "no".  Now Ben has had a really good cough for about a week now and at that point, I was wishing he were in the room so he could cough for Ellie.  When he goes to sibling care he is not supposed to have a cough, but because we were suspicious that his cough is more an allergic reaction to a large tree nearby that is pollinating our house (yellow dust EVERYWHERE), he was allowed admittance, Thursday and Friday.  He told me afterwards that even though he coughed at Tyler's Place, they all decided to just ignore it. 

Or a little thing like my toe...Now back to me and my toe.  Everyone around here seems to think that I have broken my 2nd to the littlest toe.  Which can heal in on its own, or you can tape two of the toes together.  Problem is, the toe is so swollen and bruised and painful and I am too afraid to touch it (or have someone else touch it!)  I've been brought some tape just in case I become courageous enough to go for it.  I'm certainly not feeling it right now.  Plus, I feel like a big baby because seriously what is a little toe compared with 2 brain surgeries??  I feel like Queen Kennedy as I sit on the sofa with my left leg elevated and make my requests from that position, trying not to get up unless absolutely necessary.  Am I totally boring you all right now? 

Great big thanks to Lindsey for hanging out with Ben and feeding him while Thom and I switched hospital shifts.  Great big thanks to Karly for not only having a playdate with Ben, but feeding the kids dinner AND folding a load of laundry.  I mean geez louise, talk about feeling like a Queen!  Ben has been feeling a bit grumpy the last few days, which seems pretty expected as we are all feeling slightly off.  So I think it's an especially good time for him to be around people who are not feeling as "off" as  we are.

Restful day

Dr. Iskandar just came and reviewed the MRI with me.  He seemed kind of like a proud poppa on the day his baby was born.  He showed me the MRI from December prior to the 4 surgeries.  WAY big huge tumorous area right smack dab in the middle of her brain.  Then the MRI from yesterday, very little tumor left to be seen with the exception of the optic nerve.  He even said that often after such a massive resection, the tumor does not come back!!  We had to high five on that one.   That is what we have been wishing for for so many years.  Ellie is totally resting today.   She is having a bit of trouble breathing.  So they are doing some kind of vibration treatment to try to get her lungs functioning better.  Dr. Iskandar suggested that much of this will clear up once she is walking around.  Which kind of made me chuckle to myself because she is in NO way ready to be up and walking around, she's barely conscious right now.  One of the nurses told me on a previous visit that the surgeons are always wanting to get the patients up and around before they are ready.

SSDD the final chapter

Same surgery different day the final chapter because I am sure for crying out loud after 4 tries this has to be it!   It is 2pm and the neurosurgeon (aka "king of the hospital, Dr. Iskandar) came in to say that everything went well.  He seemed very confident, which is what you like to see after brain surgery.  She is now at MRI to see the big picture of what was accomplished today.  We have been working to keep Ben out of Ellie's room until she is bit more recovered, feeling like she just cannot handle Ben energy in her room right now.  Too startling for some one right out of brain surgery.  Thom said she threw up this morning before surgery.  Just kinda laid there and it happened b/c she did not have the energy to get all panicked about throwing up (again).   I am so looking forward to when she is feeling better and smiling again, her sweet smile. 

My next to the baby toe is recovering and now a  beautiful shade of purple.  I have been limping around the hospital and even used a wheelchair to locomote yesterday.  I really do not know how to steer those things.  Ben pushed me to the garage when we were leaving and he was trying stunts--how fast can we go?  Followed by my shrieks and then, how slow can we go?  I think the thing that has amazed me is how much a little tiny toe can have such a huge impact on my day.  Which then leads me to think what a big impact a brain can have on your day.  Thom stubbed the same toe a few months ago, so we have decided maybe that 4th toe just is not as smart as the others.  Maybe my hurty toe has made me a bit more compassionate.  Maybe it has made me slow down a little more during this hospital stay.  At the very least I am greatful that it is on my left foot so I can still drive the car with my right.

Ain't no sunshine

Oh boy (or as Ellie would say, "oh girl") the days without smiles are the hardest.  And if my face wore swollen up so much that one of my eyes wouldn't open AND I felt nauseated AND my head hurt AND I had IVs in both hands so I couldn't do the things I loved most (peel crayons, look at books), I do not think I would be in any smiling happy snappy mood either.  It reminds me of during labor when I become serious and Thom says that is the hardest part for him, when nothing seems funny to me anymore.  When my mom and Moffat came to visit a couple of weeks ago, my mom was completely amazed when Ellie came back from chemo and did not want to go lay down, even though she looked like she was asleep already, because she wanted to connect with my mom and Moffat.  She did not want to miss a moment of fun.  So I know if she is not talking or laughing or smiling that she  must be highly highly uncomfortable right now.   It just breaks my heart to see such a sweet, brave girl suffering so quietly.  I wish I could take it all away and throw it right out the window, maybe it could turn into little confetti hearts.  And to think she will be going through another surgery tomorrow seems almost insurmountable!  Dang, and I write this right after my mom sent me an e-mail letting me know how proud she was of my pma (positive mental attitude).  Maybe it's my pma that flew out the window.

Lucky 4

After reviewing the MRI, Dr. Iskandar decided that it would be safe to remove almost all the rest of the tumor.  (Everything with the exception of what is on the optic nerve.)    I think all of our surgeries are really making the case for the hospital purchasing a surgical MRI.  So we are back at it tomorrow. 

Ellie is feeling pretty nauseated today, as well as last night apparently.  She is low on some of her electorlytes (potassium and phosphorous) but her sodium has remained steady (yeah!!  go salty!)  The head bandage is also bugging Ellie as her face is begining to swell and the bandage is feeling tighter and tighter.  Esther is reading the classic book , Eloise to Ellie right now (that's a lot of "E" names isn't it?)  Ellie keeps correcting her pronunciation of characters and french words, based, of course on the way I have enunciated them in the past.  Which means I am, in fact, always right (take note, Thom.)      

Yesterday we were trying to figure out how to get Thom to work as much as possible today.  I called our great friend, Lainie (her husband, Argyle, and I were resident assistants together in college).  I asked if she could watch Ben for a few hours.  Even though Lainie had already promised to watch a friend's two-year-old, she  agreed to watch Ben, saying, "I mean, really what's one more?"  (She already has a 3-year-old girl and 5-year-old boy.)  A great big thanks, not only for her courage, but for her willingness to take Ben at the very last minute.    

Once again, please let me thank all of you who helped out yesterday, making our day so much brighter.  Cynthia & Caitlyn, as well as Karly & Val for making Ben's day super-de-duper fun!  Esther & Brittany for entertaining me at the hospital, making the day just fly by.  For phone calls from my sister and the appropriate amount of indignation when it was called for, the voicemail from my mom, e-mail from my Dad and e-mails from my mother-in-law (and more bubble wrap!) and texts from my sweet brother Kirk.  (If I didn't mention you for your contribution yesterday, please excuse me, I stubbed one of my little toes this morning and it is making it hard for me to think clearly...sort of like when Gretyl from Sound of Music hurts her finger in her brother, Kurt's mouth, and she can't possibly sing. If you don't know whtat I'm talking about, you need to go rent the movie right now.  Seriously.)

Final update of the day

Dr. Iskandar said that he was much more aggressive this time and he hopes that he did not do any damage.  (Which I absolutely know his intent is always to aid Ellie and not hurt her.)  The cysts that were growing at such a rapid rate were easily removed with the tumor and he is hopeful that with the tumor gone, the cysts will not come back (or at least as quickly as they were before.)  He left some kind of marker in Ellie's brain (I keep imagining like a toothpick or a paper clip which seems weird.)  He was not sure if the tumor in the area could be removed or not so he wanted to mark it for the MRI.  (Oh, btw Ellie is right now having an MRI).  If it looks like the tumor can be safely removed in this area according to the MRI, he will go back in on Friday and do so.

Closing up

Now in the process of closing up, that typically takes about an hour (started closing at around 3pm).  May not be able to blog again until tomorrow.  Thanks for all of your love and support today!

SSDD

Same Surgery Different Day.   So yesterday was my total meltdown pre-surgery day where I had to wear huge black sunglasses to pick Ellie up from school, not because I am a local celebrity, but because I could not stop crying.  I was a MESS, you can ask my sister, she'll confirm this.  But today has been much much less dramatic.  It helps that Thom and Dr. Iskandar were both so confident and somewhat excited that this surgery would complete the set started back in February.  Thom told me that the meeting Monday with Dr. Iskandar he seemed more excited about finishing up what he had started, more excited than he had ever seemed before.  Ben and I stayed home this morning in the hope that Ben could get a bit more sleep (we were naughty and stayed up late watching Glee, I'll admit it.)  According to Esther, Brittany & Thom who were with Ellie pre-surgery, Ellie was in top form.  She was in high spirits, giggling at everything, really working the room.   Which then makes you feel like, "OK, why are we doing this again?"  Or alternatively, "Can we get some kind of guaruntee that she will be in this good of spirits post surgically?" 

[caption id="attachment_2415" align="alignright" width="300" caption="A bonding moment (and caught on film!)"][/caption]

Ben was super duper excited to hear that not only would he have ONE playdate today (with the fabulous Cynthia & Caitlyn) but TWO playdates (the second with the wonderful Karly and Val).  Thom thought he was lucky to have a day with the "ladies" (and really cute, smart, funny ones at that!)  He was so psyched that even though we'd set it up so Ben could sleep in a bit this morning, he woke up at around 6:45 exclaiming at how he needed to get up for his playdates.     Will let you know when anything else happens.  Maybe a bit boring for awhile....

third time is a charm...

We had an MRI on Friday that showed that the cysts have continued to grow.  The neurosurgeon is suggesting going in for yet another resection on Wednesday, May 26th (one week from today).  He will remove both more tumor and the cysts which seem to be growing quite rapidly since her February surgeries.  Just wanted to let you all know the latest.  We just found out yesterday, so I apologize if you are hearing this through the blog rather than through a phone call, but not much time for planning this time (which I sort of prefer, less time to feel anxious about the up coming surgery.)

Finding the gift

[caption id="attachment_1634" align="alignright" width="150" caption="A surprised baby Ben. Could not resist that little bum back there."][/caption]

There are times, as of late, when I have been feeling somewhat disappointed, frustrated, angry, despairing at Ellie's rate of recovery.  I have wished wholeheartedly for her to feel better, to not be drooling, not be slurring her words and to have the full use full-time of her face (right now most of the time only the left half of Ellie's face is functioning).  Oh yeah and for her not to have hurty joints or feet or of course the ever popular after brain surgery,  headache.  A lot to ask for, I know.  It feels at times as though I am slowly watching Ellie lose more and more of her functions.  At these times, it feels as if she is slipping away, albeit at a sloooow rate.  When I start to go down this rather slippery slope of despair, I realize that this is merely my perception and in no way Ellie's.  She continues to live in her jifillage (joy + filled + village) regardless.  The world she inhabits does not include tumors.  It just doesn't.  I want to live there too.

[caption id="attachment_1252" align="alignleft" width="191" caption="Ellie in her jifillage."][/caption]

Last week we received yet another package from Grandma in the mail.  The most coveted item in the package was a sheet of bubble wrap.  The kind with large bubbles, not the small bubbled kind.  First Ben was playing with said bubble wrap, popping them by standing on them, jumping on them, using as many body parts as possible to make popping noises.  Ellie was also much interested in the bubble wrap.  When Ben went upstairs for a bath, I sneakily gave the bubble wrap to Ellie so she could have a turn.  After Ben's bath, he was appalled that the bubble wrap he had been playing with was now in Ellie's hands.  He raced over and snatched them out of her hands.  We then began discussing how we can't really grab things from other people, it's just not a nice thing to do.  We brainstormed how we could solve this bubble wrap dilemna--look for more in the basement, cut the piece in half, etc.  Ben handed the bubble wrap back to his sister.  Ellie's face lit up and she proclaimed her brother "as sweet as candy" for giving her a sheet of bubble wrap.  In the few minutes that Ben had the bubble wrap, Ellie had completely forgotten the upset of him snatching it from her hands.  All she saw was how wonderful it was in that moment for Ben to be giving her such a precious gift.  How magnificent to live in a world so filled with joy that you do not even remember that someone did something you did not appreciate.  And how fortunate are we to have a daughter who continually reminds us of such important lessons?

another of Ben's wishes comes true

On Wednesday, I dropped my mom and Moffat off at the airport and returned home with Ben.  My mom called after checking in to tell me how much she had enjoyed our magnificent visit.  As she was talking, I kept hearing a beeping.  I looked at my phone to see if someone else were trying to call but did not see any message, so I assumed it was my mom's phone.  After I hung up, the phone informed me that I had missed a call from Ellie's teacher, Ms. Pettit.  When I listened to the voicemail, I discovered that Ellie was having a seizure that was  lasting around 5 minutes.  When a seizure lasts longer than 3 minutes, we have been instructed to administer Ellie's anti-seizure medication.  The paramedics were called in for assistance when it appeared Ellie was not coming out of it.  I was panicked as I tried to get my phone to work and kept hitting the wrong buttons, tried to get Ben's lunch packed up and myself in the car while continuing to breathe breathe breathe. 

When I arrived at the school, Ellie's teacher was awaiting us outside.  I raced in and she assisted Ben in exiting the car.    Ellie was coming around by the time I arrived, although she was still laying on her side, she was chatting up the medical team surrounding her.  An ambulance had been called to transport Ellie to the ER.  Ellie was nervous about riding in the ambulance by herself so I asked if Ben could also ride in the ambulance with me.  As the paramedics wheeled Ellie to the elevator, Ben bounded down the steps, telling everyone in sight that he was going to get to ride in an ambulance.  I mean he could not believe his good luck.  What a contrast between all of the somber adults, worried about Ellie's well-being and Ben full of enthusiasm and exuberance for his upcoming adventure.  Ellie was a bit afraid riding in bed where she was strapped down until I told her it was similar to riding in a bed at the hospital (which she has done plenty of as of late!)  The whole time we were riding, Ben had a running list of questions.  Why does the route look different from an ambulance?  (Answer:  Because we were facing back instead of front.)  Why did we keep stopping? (Answer: stop lights.) What other colors do ambulances come in?  (Answer:  red, white, green.  Ben would like a green one "next time".)  The baby was moving around like crazy the whole ambulance ride. 

By the time we arrived in the ER, Ellie had pretty much recovered and, although she was super sleepy on the ambulance ride, she was pretty much back to her chatty self in the ER.  And can I just say that you really do get the best service when you arrive by ambulance.  A child life worker, Amanda, was in the room and immediately set to work accompanying Ben to Tyler's Place.  Ellie had had a highly stinky and messy accident during her seizure so I set to work cleaning her up.  When Amanda returned she assisted me in that task as well as retrieving crayons for Ellie to work on.  Thom arrived a bit later with clean clothes for Ellie (and more crayons just in case).  He explained that he had gone ahead and ran his errands beforehand (what I titled, "Pulling an Elaine". From the Seinfeld episode where Elaine takes the time to stop and get candy at the movie theatre before arriving at the hospital bed of a friend.)   No one really knows why Ellie had a seizure today.  It seemed that she had a small one (lasting about a minute), last Wednesday.  Perhaps Wednesdays just make her have seizures.  It remains yet another medical mystery. 

Amazing how a day can change in a flash and then change right back...I think one thing I am greatful for today is that Ellie was doing better even when I arrived at the school.  Whenever there is some type of "emergency" situation that Ellie quickly recovers from, I somehow feel as if we have bypassed something.  Like we might have had to stay once again in the hospital, but we somehow got out of it.  Like getting to leave work early.  Or cake not on your birthday.  Or a surprise visit from somebody you love.  A warm day in March (in Wisconsin that does not happen very often). I almost feel giddy in the end, knowing that she is home now and feeling better.  Having Ben with us and his super excited attitude also puts things in a different perspective than we would have had otherwise.  Knowing that HE was beyond excited, made the experience more fun than scary.  And seriously we have been to the ER so many times as of late it hardly seems   'emergency'  anymore.  On the ambulance ride, the paramedic told Ellie that she would probably rather be doing something else than going back to the hospital.  To which I responded that we like to focus on the things we like about the hospital, such as all the friends we have there.  Then when we arrived, our oncology nurse, the fabulous Peter, was called to see if he could come and do the poke, making it easier for Ellie.  Because as Ben so clearly illustrates, going to the hospital does not have to be a tragedy or even something that ruins our day (although I think riding in the ambulance most certainly MADE his day).

Constant

[caption id="attachment_1196" align="alignleft" width="300" caption="She let me know pretty early on that she would not tolerate those bows."][/caption]

Last week, Ben and I were driving to pick Ellie up from school.  It was one of those absolutely gorgeous spring days that we often seem to have all summer long here in Wisconsin.  Bright blue skies, a breeze, maybe just a hint of chill in the air.  As we drove by Ellie's school, I noticed sweet Ellie standing outside with her class as they worked in the garden.  Ellie sort of stood off on her own, just contently staring at the sky or trees.  Suddenly a man across the street turned on his lawn mower and Ellie had a startled look on her face as she does any time loud noises startle her.  What an illustration of  how constant Ellie is.  I mean most of us (even 5-year-old Ben) alter ourselves depending on who we are with and what the situation calls for.  Not Ellie.  She will have the same response regardless of if she is alone in her room, at school, on a walk...She is just constant.  I was sort of inspired as I sometimes find myself twisting and turning myself into loops trying to "fit into" a situation.  How much more freeing it would be to just be able to authentically be myself regardless of what was happening around me.