Ellie is coming HOME!!

Today at noonish.  More details later, gotta run, Ben in bath...

Giggle juice

This morning they must have given Ellie some giggle juice because I am telling you, everything I say is absolutely hilarious to her.  Unfortunately when she laughs it hurts her incision site, so it is sort of a laugh/grimace kind of action.  Then I tell her, "Don't laugh!"  Which only makes her laugh all the more.  For example, her monitor started beeping and said, "skipped a beat" and I commented how this sounded like a Janet Jackson song, "You skipped a beat..." of course with the appropriate Janet type of moves.  And she could not stop laughing.  Then I told Ellie that my nose keeps running and it is driving me crazy.  She could not stop laughing envisioning my nose running off of my face.  At this point, I guess I don't need jokes to make her laugh, just more giggle juice. 

So recovery yesterday took a lot longer, which was why I had not heard back from Thom.  I mean it took hours.  Here is the report I received from Thom about those hours upon hours in recovery.  "She took longer in recovery than expected."  Is it something about having that Y chromosome that makes all the details seep out of his body before he can report them to me?  I am quite certain that I would have had at the very least a 20 minute monologue about all of the events.   Or at the very least a blog.  God bless him, he can't help it.  I guess it just gives me more time to talk.

Right now Ellie is having another MRI (one that was originally scheduled for 8:30 am this morning, but you know we are on hospital time here).  When I questioned Thom as to why she is having another MRI when she didn't after previous shunt revisions, Thom told me he had no idea.  I am guessing they want a more detailed picture of what is going on than the numerous quick brain MRIs we have completed as of late.  Ellie will be really really happy when she awakens because she will be able to eat again, something she was very much wanting to do before the MRI.   

Overall Ellie is doing much better than when I last saw her, she is able to hold a conversation (until she becomes too tired).  A student volunteer was reading to Ellie earlier today and was having trouble saying one of Ellie's words.  Ellie very quietly and sincerely told her, "Don't worry, you will never be in trouble with me."  Oh man was it so sweet, so typical Ellie.

The blizzard that stopped Wisconsin

We had such a blizzard today that the entire state of Wisconsin shut down.  I mean I would expect something like that from a state like Tennessee, but when Wisconsin shuts down, you know it is one ferocious storm!!  So today while Ellie is in surgery, Ben & I were hunkered down at home.  Ben is not feeling very well today, probably partially exhaustion from the crazy hours we have been keeping this week and a wee bit of a cough.  He was asking me to lay in bed and read with him several times throughout the day and now at 4:51pm, he is already asleep. 

I realized that shoveling was going to be quite a feat for me with Ben feeling under the weather.  Typically we just take him out with us and he "helps" shovel or builds something or throws snowballs.  I called my neighbor, Chris, to see if she could turn me on to a neighbor kid who would do it for me, at this point I was willing to pay the big bucks to have it done, as it did not look as if anyone could actually get to our door anymore.  When I explained what was happening today with Ellie my neighbor and her partner, Kathy came over and snowblowed (is that what you say?) our driveway and front sidewalk PLUS shoveled out our car.   Not only that but when the snow started pile up again later on in the day, Chris came back for additional shoveling.  What a load off my mind!  Thank you so much Chris & Kathy for your assistance today, I don't even know how to begin to thank you!   

I still haven't heard an update from Thom yet.  That is what makes being at home harder, not having the minute-to-minute updates and actually being able to see how she is doing with my own eyes (I am afterall, from the "show me state").  Maybe he'll comment on this blog and then I'll know....

What would "worse" look like?

Our endocrinologist, Dr. Bekx stopped by yesterday to check in with us.  During her visiting Ellie went into a seizure while she was hooked up to an EEG machine.  The EEG tech was most excited as rarely is he able to actually capture a seizure happening on the EEG.  When she started going into the seizure, her respiration rate started to fall (she shouldn't fall below 90 and it was quickly plummeting from the 90s to the 60s to the 40s!!)  I went into full panic mode, hit the nurse's call button and no one responded.  I ran out into the hallway yelling, "She's having a seizure!!!"  (If I don't panic, who will, we are after all in a hospital.)  As Dr. Bekx cooly and calmly said, "Let's get some oxygen hooked up for her.  Several nurses ran into the room to help with the set-up, Ellie started to come back around. 

For the rest of the day she was never quite back to being able to speak or sit up or move around much.  She pretty much laid in bed.  I could tell she really really wanted to speak and the strange thing is when she can't speak, suddenly the words she wants to say "jump" into my head so I can speak for her.  It reminds me of how the Aboriginal people are able to speak to each other by reading one another's minds.  Or maybe it's just because I know her so well and know what she likes to talk about.  (I think the first description is more magical, though).  Either way, it's a helpful skill to have in these situation for sure.   

Last night we became concerned because Ellie really hadn't bounced back from her seizure.  The neuro resident came by to check on Ellie and he felt confident that she was reacting sluggishly because of the anti-seizure meds we had administered.   When he suggested we contact him if Ellie got worse, Thom asked what exactly would getting worse look like?  She was lying in bed drooling, not able to speak, barely moving.  Her oxygen levels had started to drop so we'd put her back on oxygen.  Then throughout the night her respiration rate kept dropping causing the alarm to continually go off. 

In the morning, an MRI revealed that only part of her brain was being drained by the shunt.  Ellie was rushed into surgery and she will either have the shunt relocated (again) or have a "Y" shaped shunt placed.  Either way it seems like it has to get better than it was yesterday.  (This is where you respond, "Oh yeah, definitely gotta get better.")

I demand my money back!!

After a not very restful night, Ben & I arrived back at the hospital around 10am.  I had waited for Thom to call me so that I would not disturb them should he or Ellie be asleep.  I think he did not want to call me for fear that I might still be asleep.  I was anxious to see how she was doing.  When we arrived, she was sleeping.  As I started performing my normal hospital routine of putting things away, Ellie began to stir.  Her eyes opened and she looked at me.  Oh how happy I was to see those bright brown eyes starring back at me.  But she wasn't saying anything.  I could tell she wanted to, but she somehow just couldn't.  Medical professionals kept coming in and asking me questions, "Has she urinated yet?"  To which I had no reply as Ben had dragged Thom off to the playroom before I could ask these essential questions.  Thus, I steered everyone to the playroom for any questions about the evening shift.  Dr. Hsu (neurologist) came in with a roomful of medical students/residents to discuss Ellie's case.  Ellie lay motionless on the bed, barely able to turn her head to the left side to look at me while having occasional jerking in her arms and chests (clonic movements apparently).  I was a bit panicked, feeling as if Ellie talking in a slurred mumbled way was so much better than not being able to talk at all for crying out loud.  Was I going to have to demand my money back??  Almost immediately after Dr. Hsu and crew left, Ellie began to talk with me.  Here's what she kept saying, "I don't need to go."  "Really I don't need to go."  "I don't need to go."  It was like her brain was stuck on letting us know that she did not need to go to the bathroom.  Or maybe when she could not talk that was what she so desperately wanted to say.  OK, I thought repeating the same thing over and over is better than not talking at all.   By the time Thom & Ben returned from the playroom, Ellie was much more herself, coming up with silly things to say.  Thom was amazed at how much she had progressed in the short amount of time he had been gone.  I guess she just needed a little mommy magic (ha!)

It was around lunchtime so I suggested I go get a bite to eat with Ben before Thom & Ben left for the day.  As I said this, Ellie suddenly insisted that she be able to eat something too.  Something she has not been interested in doing for awhile.  When we brought the muffin back to her room, her monitor started going crazy beeping because her heart rate and resperation went up so fast.  She gobbled down that muffin.

Now Ellie is resting peacefully in bed, not asleep but not energetic enough to really do much but lay and stare.  Funny how after seeing her so much worse yesterday, even that I am even grateful for that.

My best advice to you is to avoid the ER when at all possible...

I am ashamed to admit, I have been dwelling in a deep dark hole of despair for the past couple of months.  Ellie has not being doing well.  Drooling, mumbling, not sleeping well, sleeping too much, difficulty walking, stumbling, continually feeling as if she is falling.  And through it all not complaining one iota (well only if Ben does something she does not approve of).  And me feeling as if each and every day she was slipping a bit away.  Thinking frequently of how in the world I would survive without this angel who has inhabited my life for the past almost ten years.

Last Thursday Ellie's school nurse (have I said how much I adore her?)  Many days Ellie tells me that the favorite part of her school day is going to visit Stephanie the nurse and I can totally see why.  She is just so friendly and compassionate and smart and funny and you just feel like in some way on your side rooting for you.  But I digress, she called to tell me that Ellie seemed as if she was displaying some signs of hydrocephalous (too much cerebral spinal fluid trapped in the brain.)  I told her that I had noticed the same symptoms increasing as of late.  When we picked Ellie up from school, her teacher,  Ms. Pettit whom I also adore because I feel like she really empathizes with being a parent and really bonds with Ellie and she is oh-so-friendly, I could just tit tat (talk + chit chat) with her for hours.  Anyway, she let me know that Ellie wasn't doing so well but seemed to revive after a nap.  We decided to go to a sleep doctor to see if the symptoms would be resolved with more sleep.

On Friday the sleep clinic called with an opening and we jumped at the opportunity.  Well, then Saturday Ellie slept almost the entire day, we thought OMG, that sleep clinic is so effective and FAST!!  WOW!!  We hadn't even started in sleep medications, we were only collecting data.  By Sunday she seemed to be doing better, but was having some difficulty staying vertical, she seemed to keep falling over.  If I asked her to put on her shoes, she would start and then forget what the heck baby fire she was doing.

Somehow, some way we decided to take her to school this morning.  Soon after drop-off, Jo from the nurse's office called to say it looked as if Ellie were having multiple seizures.  Thom raced to pick her up and take her to the ER while Ben and I readied ourselves to meet up with them.

Thom & Ellie arrived in the ER at maybe 9am at the latest.  Ben & I arrived at 9:45am. Thom told me that they were trying to read her temperature and it was coming up at 93 or 94 degrees, so they kept trying different thermometers.  When I suggested to the nurse that her temperature had in fact been that low in the past when she was unable to regulate her body temperature, the nurse asked me (somewhat snottily) if I wanted them to check it rectally to see if that was an accurate reading.  What I thought was, "No, I don't think any of us would be friends after something like that."  What I said, was "Oh, ah, uuu, no I don't think so."

Then a more pleasant medical student arrived to fill me in on the game plan.  She told me they wanted to run labs to check her electrolytes (makes total sense because Ellie's sodium has been wonky the last few months).  Then she told me they wanted to check for a urinary tract infection.  I musta looked at her as if she'd grown a second head.  I was thinking, "All the symptoms I've given you, all the past history you've read on my child and THIS is what you want to check into??  REALLY???  SERIOUSLY??"  Noticing my incredulity, she mentioned that they were also wanting to do an MRI, sort of as an afterthought.

Finally finally we did go up for the MRI.

Then we waited and waited and waited.  While I watched High School Musical 2 (Go Wildcats!), Ellie continued to sleep.  She would occasionally awaken to tell me in her soft and slurred voice how sad she felt to be in the hospital.  Possibly because the whole urinary tract infection thing was not panning out, one nurse told Ellie that she would probably be going home today.  I was flabbergasted.  I could not imagine how we could function with Ellie barely able to walk, talk or even stay awake at that point.  Occasionally, we would hear a young child wailing and I was struck by memories of how challenging it is having a toddler in the ER because everything but everything is terrifying.  We kept throwing that little guy huggle snuggles in hopes that he would feel better.   After one such throw, he actually did stop crying and I was adamant that Ellie's snuggle had done the trick.

At around 2pm, I started losing my energy and my patience and decided that  a Green Tea Latte was just the thing to revive me.  (Oh yummy green tea latte, how I love you so!!!)  Ben and I ventured to the local Starbucks with a drive thru, intending to utilize that drive thru service.  Instead, Ben wanted to go in to have a cup of water.   And really what else did we have to do but wait at this point, waiting at Starbuck's certainly seemed preferable to continuing to wait at the ER where I could become a little cranky.  (I have a rule about being as nice as I possibly can to people who have access to my daughter's veins and brain...)  While we were in Starbuck's I was once again struck by that surreal feeling of all these people are just living their lives, they don't even know my daughter is in the ER and I feel as if she is slipping away...It was strange (one of Ellie's favorite words).

Finally at around 4pm, the incredibly talented Dr. Iskandar arrived (luckily NOT while I was indulging in HSM 2) and he said that the shunt was not working and we needed to replace it.  Based on her current symptoms, did I think that we should do it tonight or wait until tomorrow at 1pm?  I felt incredibly underqualified to answer that question.  It seemed too big to answer, what if I picked wrong?  Yikes!

Somehow, it was a great relief to know that there was something that we could do to help her feel better.  There are times when surgery and hospitalization do not feel like the worst possible choice.  At times, it is a relief to have a team (even a medical one or maybe especially a medical one) working with you towards the same goal--Ellie feeling better.

We decided to wait until tomorrow at 1pm, and we were moved to a room on the floor (wherever Dr. Iskandar is in that hospital, things begin to happen.)

As Ellie continued to sleep and become more unresponsive throughout the evening, our nurse, Suzy (our favorite on the pediatric unit) became concerned and called Neurosurgery.  At the same time, I ran into our oncologist, Dr. Puccetti, speaking on the phone with our neurologist, Dr. Hsu (prounounced shoe).   Dr. Puccetti got off the phone and came to our room, when she saw that Ellie was not responding (or "ponding" as Ben would say), she immediately started calling Dr. Iskandar herself to get things moving along.  Ellie was quickly moved to surgery and that is where she is right now as I type this blog.  Again, you can see how so many many dramas are set in hospitals can't you?

Thom just called as I was editing to say Ellie was being moved to recovery and that Dr. Iskandar had placed another shunt through her brain that hopefully would function better than the previous one.  So now she has 2 shunts--one working and one just for decorations (Ellie will like that explanation).

Radio Celebrity

I know, I know first an audience member of Oprah, now interviewed on the radio all within a few months of each other!  What could possibly be next?  How lucky am I??

[caption id="attachment_2267" align="alignleft" width="225" caption="Ellie awaiting the limo to Queens, THAT is how you get to Sesame Street!!"][/caption]

On Friday,  I volunteered at a radio-a-thon called "Connie and Fish for Make-A-Wish" (www.connieandfish.com).  It was fanfreakintastic!!  I was super nervous because the first thing that was going to happen was I was going to be on the air talking about Ellie's wish.  When Make-A-Wish of Wisconsin sent out some sample questions, I felt a bit teary eyed just looking at them and remembering how magical our wish was.   In the letter, the foundation said that many wish families worried about getting emotional on the air, but they reassured us that getting emotional was fine, because over the radio, no one could see our facial expressions.  Thus, I concluded, becoming emotional was not a problem and might even deliver the message more powerfully.  Well, then they picked the right woman for that job!!  I can DO emotional (ask anyone in my coaching group).  I couldn't sleep well the night before wondering about the interview, pondering whether or not it would be better to send Thom than have to face this sudden onslaught of nerves.  I was worried that in my nervousness I would forget what I was going to say, go blank, or become a bumbling 15-year-old using the words, "like and you know"

[caption id="attachment_2252" align="alignright" width="225" caption="Knocking at 123 Sesame Street (Make-A-Wish trip)."][/caption]

after every thought.  But the more I thought about it the more I realized that I was THE one to tell the story, I knew that they would not get as much information from Thom as they would from me.  When I arrived I was set up at the phone bank (8 phones, 3 computer data entry stations), the coordinator instructed me on how to answer the phones.   I was so nervous by this point that I felt all sweaty and butterfly-ish as if at any moment I might just decide to black out.  Everyone was introducing themselves to me to which I responded by saying that I would most likely not recall any of the information given until after the interview.   My brain was basically on overload.

Finally, I was called to come for the interview and I nervously walked down the hall and sat in a radio booth with Connie & Fish.  I was told to put on a set of earphones and a microphone was pushed way up to my face.  Then it began and man-oh-man it was so much easier than I ever anticipated.  It was like sitting and chatting with some new friends, telling them about something I adore talking about--our wish.  I was amazed when it was over, there was so much more I had intended to say about Ellie's wish and how important it has been in our lives.  I talked about the importance of the wish on our family being able to spend time together (probably the most important aspect to Ellie and maybe

[caption id="attachment_2257" align="alignleft" width="300" caption="Ben hailing the subway train."][/caption]

Ben.  Well, for Ben at the time it might have been the subway train ride...)  I talked about how every time we have been in the hospital since the trip, we have taken our scrapbook and shared it with the nurses and doctors, how it has continually given us something else to focus on during the challenge of hospital stays.

The first call I took (pre-interview, when I was super nervous) was from the grandpa of one of the wish kids who had just been on the radio.  He was listening over the internet (who knew??) and wanted to make a contribution.  One newly divorced single mother called in and told me how she and her sons had been

[caption id="attachment_2253" align="alignright" width="300" caption="Oscar did not in fact tell us to "scram" as we anticipated."][/caption]

listening to the show.  When she told her sons that she wasn't sure how she was going to pay the mortgage, so she did not think it would be possible to make a donation, her sons went upstairs and emptied their piggy banks, coming up with $10.

A family

[caption id="attachment_2256" align="alignleft" width="300" caption="Sitting at the counter ordering up a drink (just pretend silly!)"][/caption]

came in and their son had made his transition but they were thrilled to talk about their wish trip.  Another mom came in and was gladly showing us pictures of their wish trip to Disney World, a beautiful scrapbook of their time together.  She had 2 children with her and one on the way, but the little girl in the scrapbook wasn't there.  At first, I thought, "Where is the beautiful smiling girl in the pictures?"  And then it hit me.she too had passed.  What astounded me was how these families had the courage to come and talk about this wonderful amazing memory that they had made with their family, in the hopes that more families could experience that wonderfulness.  In a way, it seemed a relief to be able to talk about something so happy, so touching, so memorable without everyone around them getting freaked out or sad.

[caption id="attachment_2260" align="alignright" width="300" caption="That Rosita was determined to teach Ellie a Spanish word."][/caption]

One mom who was interviewed after me came in wanting to talk with me because our stories were so similar.   Her 6-year-old son had made a wish to sing the national anthem at a Brewer's game (apparently this is on youtube, if any one knows the address will you send it to me? Then I will post it here).

I have volunteered recently for Capital Candlelighters, an organization geared at helping families with children experiencing cancer.  When I have been to Capital Candlelighters events everyone is talking about cancer and cancer treatment.  For some people, this type of community is essential to their wellbeing and ability to overcome the hardships unique to a child with cancer.  The thing I truly appreciate about Make-A-Wish when I go to one of their functions is that rarely does anyone talk about disease or illness.  Instead, the conversations are about dreams that are about to come true or happy memories of a magical time together.  Creating hope.  For me, the latter feels so much better than the former because so much of the time I feel as if Brain Tumor is the background music of my life, talking about it does not often feel uplifting to me.  When the current season of Brothers & Sisters had a main character develop cancer, I quit watching, I figured, I already have that dramatic cancer channel on at home, I don't have to watch it on television!

[caption id="attachment_2254" align="alignleft" width="300" caption="Sitting on the steps of 123 with mom, dad AND grandparents."][/caption]

I have to say that yesterday was one of the most awe-inspiring, touching, moving, emotional, fun with a purpose kind of afternoons I have ever had.  The energy and camaraderie in the room was wonderful, we were all working together as a team to make this happen.  The staff was magnificent, both organized and friendly, immediately making me feel welcome and an essential part of what was happening.  The fun was only enhanced by the way I was treated, like a celebrity, not only for being on the radio and telling my story but for being a Wish mom and a Wishgranter and a volunteer at the radio-a-thon.  My thought, was "Of course I would want to do as much as I possibly can for this amazing organization.  Who wouldn't want to make some one's wish come true??  (Here's where Ellie would say, Oscar the Grouch wouldn't.)"  Honestly, though, feeling appreciated for doing these things that I loved felt awesome too.

[caption id="attachment_2269" align="alignright" width="202" caption="Ellie in our sweet hotel suite in Times Square!"][/caption]

The excitement built at the end of the day as the radio-a-thon was ending.  I would put down my phone and it would immediately start ringing again.  I was getting "phone neck" and hand cramps, but I had to race ahead and get those pledges that were coming in.  The phone kept on ringing even after the 6pm deadline.  I took one call from a volunteer who works in the Make-A-Wish office every single week who gave $1000.  I had to give her a big ol' "WHOOO HOOO!!"  for that one.  All together, the radio-a-thon raised over $200,000.  Here's a great big bunch of gratitude for all of the wonderful people who pulled together to make that many more wishes come true, what an honor to be a part of that.