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.