Sunny Days with Debi

My fabulous brother Kip and his wonderful partner Patrick Kyle invited us to stay in a hotel with them in St. Louis during the holidays.  At first we were reluctant, wondering if Ellie would be up for such an undertaking.  Then one evening it just hit me that Ellie would never ever refuse a trip to see someone she loved regardless of how tired she felt upon arrival.  We found a hotel in St. Louis meeting our requirements–a 2-room suite, indoor swimming pool, and restaurant on site.  We decided to travel down the day before our time with the uncles so that we would be relaxed and ready for fun upon their arrival. 

We drove to St. Louis and checked in on Tuesday.  When we checked in on Tuesday, we were upgraded to a floor that gave us access to free breakfast in a lounge area that had snacks and sodas on hand at all times.  We felt pretty spiffy.  On Wednesday, Thom & Ben went to the Science Museum to see a special Dinosaur exhibit.  Fortunately for us, Thom’s younger brother, Dan and his lovely family were in St. Louis for a convention, so we were able to meet up with them while in town.  One of the things I recall most is how my nephew, Noah explained that when his mom got older he would hold her as she has held him since he was a baby.  I mean it was one of the sweetest things, that he was already planning on sharing the love he has felt from his wonderful mother, Sara.  Then, my niece, Noah’s younger sister, Mia, chimed in, wondering if he’d have to hold up their mother because she was dead.  It was so unexpected after such a loving statement, I could not stop laughing about it for the rest of the day. 

While at the hotel, Kip and Patrick were playing hide-n-seek with Ben in the hotel room.  Kip would really stretch the game out, “I wonder if Ben is hiding behind this picture? Maybe he’s inside the fridge?”  Well when Patrick started playing, he immediately found Ben, to which Ben responded by bursting into tears.  Kip told Patrick quite huffily, “You aren’t supposed to FIND him!”  At around the same time, Ellie was showing her uncles how to do the attitalk (attitude walk–hands on hips, never to be done on the stairs).  Ellie got up to show them her attitalk and her bummy was totally hanging out of her pants and undies.  Kip and Patrick could not stop laughing, to which Ben assumed was in response to something he had done.  So then Ben started trying to retrace his previous actions to figure out what was so darn amusing. 

After staying in St. Louis, we decided to go for broke and travel on to Memphis, another 5 hour drive.  My children are just the perfect age for car trips right now.  All we need is our personal DVD player for Ben and a box of DVDs and a box of crayons for Ellie to peel.  I barely recall the children asking when we would be at our destination because it just so rarely happened.  In Memphis, Ben really discovered his love of playing with his cousins.  The 2nd morning he decided he would sit on the stairs awaiting the other children’s awakening.  What he most loved to do was to just run around the house over and over and over.  If the other children were not running around, he would say, “Hey let’s go chase!” 

When we arrived in Memphis, I had my hair styled in two braids.  A few minutes after our arrival, my niece, Bella, came back into the room sporting the same hair style.  I felt honored that she trusted my hair judgement enough to want to simulate it.  Bella is quite the fashionista, so it was high praise indeed. 

At one point he gave his 2-year-old cousin a dinosaur, one he felt he had outgrown.  To which his cousin exclaimed, “Wow!  You got me a present??”  To which Ben responded with, “Yeah, I didn’t really like that one.” 

The weird thing was the more we traveled, the more our car became smaller and smaller.  At one point a similarly sized car passed us with only one passenger on board.  It looked so spacious in his car with a pillow in the passenger seat and clothes hanging in the back window.  I thought, “Look at all that ROOM!!!”  Before heading back to Madison, we stopped and spent the night at Nancy and Gene’s (aka Grandma and Grandpa, Thom’s parents). 

As I suspected before this trip, I have never ever regretted making the trek.  Even though Ellie was extremely fatigued.  It was well worth it to create so many memories with this fabulous family whom we adore.  Since then, Ben has often wondered when he would get to see his cousins again.  Would he have to be an adult for that to happen?  I know that we will find a way to be together again soon because it is just too much fun when we are all together. 

(If anyone has any photos of this great adventure, would love to include them in this blog….)

We arrived home this afternoon from our extended hospital stay (3 weeks this time).

In honor of it being award season and the Spare Tire Awards given out by my brother, Kip, after his cross country travels, here are the first ever hospital awards:

He looks surprisingly quiet right there.

Loudest visitor:  Ben, hands down.  No contest.

Most fun had in hospital setting:  Ben, hands down.  No contest.

Most fun had in the hospital setting runner up:  Karly, she can just make me laugh, she was my entertainment during Ellie’s first surgery.

Greatest book recommendations/most delumptious (delicious + scrumptious) English Muffins:  Sent from my aunt Suzanne.   She is a former librarian and always gives me great book recommendations.

Most laid back:  Thom.  Couldn’t have done it with Thom’s courageous attitude and his absolute knowing that Ellie was receiving the very best care from the very best surgeon.  I credit him and his attitude with making these surgeries and this hospital stay the easiest one yet. 

Runner up for most poop in one sitting:  Ellie Kennedy (so close to being the winner on that one!! Her aunt Susan would be so proud.)  When the nurse came in to dump Ellie’s “dump” from the commode, she said, “WOW!”  But she told us the one little boy had filled the entire commode and she had given him an actual certificate to commemorate his accomplishment.  We were so close. 

Most informed:  My sister, Susan (I discovered when my brother and I were in St. Louis and she actually knew more about our plans than we did even when Kip and I were physically in the same room…)

How could this NOT be the most favorite part of his day??

Most meals delivered:  Janna (Janna planned on providing us with 5 weeks of meals and it has been such a relief to come home from a day at the hospital and just have our food already taken care of.)

Most visits:  Brittany has been in the hospital almost every single day not only this visit but the hospital stay back in January. 

Most surprising delivery:  Laurie Schmidt, Ellie’s occupational therapist from school, mailed a card and gift certificate for a restaurant near the hospital to the hospital.  I don’t think anyone has ever actually mailed us there and it was quite surprising and delightful. 

Longest distance traveled:  Betsy C.  traveled from Chicago to attend the birthday celebrations.  The day was that much better having her with us.

Excellent Esther and her adorable children.

Most crayons delivered:  Esther Kim (She scoured not only her house but her sister’s house to deliver a huge container of  crayons that kept Ellie occupied for an entire afternoon.)

Best texts:  My brother Kirk keeps sending me inspirational/loving texts, just brightens my day. 

Best at convincing me he was planning a surprise without doing anything at all:  My brother Kip.

Best at thinking 40 degrees is a heat wave–Cynthia. (This award kinda cracks me up because my sister who lives in Memphis will say that if it is 40, they cannot possibly leave the house it is too cold.  But when it got up to 40 here recently, Cynthia was concerned that the meal she wanted to drop off on our front porch would go bad if left out too long in the heat.  Just funny how your perspective changes depending upon where you are.)  Hard to come up with an award for Cynthia because she has done so much.  She has made us delicious meals, wonderful chocolate chip cookies.  She has offered to take Ben on playdates (with one actually happening b/c of our wacky schedule).  She has visited with gifts.  She even went to a Kevin Henkes book signing and had him sign a copy of his latest book for Ellie.   AND she has loaned me maternity clothes. 

Jennifer and baby Alex join in our family fun!

Best smell of springtime:  Jennifer Wilkinson.  Jennifer brought me a hyacinth plant for my birthday and as I type I can smell the wonderful springtime smell wafting toward me.  In addition, she left work to pick us up this wonderful Chinese food close to her work the day of surgery numero uno.  It was just a nice break in the day to have a visit from Jennifer AND to not have to think about what to eat. 

Longest distance phone call:  My mom from Malawi on the day of surgery. 

Longest distance for crayons to travel:  Grandma & Grandpa Kennedy.  Those crayons traveled all the way from St.

Bella and Sophia named me "Awesome Aunt" on my birthday.

Best rendition of the song “Happy Birthday”:  Kirk, Bella, Sophia, &  Dariush rendition mostly because they called me “awesome aunt”, but also because it was just so darn cute. 

Best baker/conversation maker:  Ms. Sue Zwart.  Not only did Ms. Zwart (Ellie’s special ed teacher last year) totally keep the conversation going and keep Ellie included in the room while she visited.  But she brought home-made chocolate chip and frosted flower cookies.  Made it so I could not wait to get to the hospital for more yummy delicious cookies!

Best silly jokes:  Dan, Sara, Zach, Noah, Mia & Hannah.

Biggest football fan:  My dad.

Looks best in the color orange:  Ms. Mack, Ellie’s third grade teacher looks stunning, simply stunning in the color orange.   Of course this is not what I like the very best about her.  I like that she brought me chocolates.  Ok that is also not what I like the best about her.  There are so many things I adore about Ms. Mack, but probably in the hospital setting with Ellie the thing I appreciated the most was how much genuine interest and attention she paid to Ellie.  It’s priceless.

Most courageous childcare offer:  Lainie, although she already has 2 children at home under the age of 5, she offered to take Ben one day for a playdate.  Wow.  That’s just about all I can say to that.

Best at not letting me cry by myself:  Ms. Molly Petitt.  The day before surgery, as I was picking Ellie up from school, I started getting emotional thinking about how I would not be doing that again for awhile.  Even though it was a snowy or cloudy day, I had my big ol’ sun glasses that cover half my face on.  When I pulled up, Ms. Petitt and Ms. Latko were walking Ellie out to the car.  When Molly saw that I was crying, she immediately grabbed me into a hug and started crying too.  Ms. Latko did not realize I was crying and so was reporting on the day.  But then when she realized that I was crying she joined right in. 

Best at joining in on a group cry:  Ms. Kendra Latko.  Once she realized it was “have a good cry time”, Ms. Latko did not leave us hanging out there on our own, but joined right in.  I like that in a person.     

Best car service:  Chris & Kathy.  When the red light went on in our car, it was Chris who came and delivered Ben & Thom to the hospital.  Chris also had a playdate with Ben one afternoon to which Ben proclaimed that he wanted to go there the next day.  PLUS they made sure our sidewalk was shoveled during snowstorms.  PLUS they placed our trash cans out on trash day.  But wait, there’s more.  They also made us a yummy lasagna. 

Smallest teddy bear:  Stephanie, super-duper school nurse, brought Ellie the tiniest teddy bear we had ever seen, it’s like a teddy bear’s teddy bear.  So cute. 

According to Ben, Juna is exactly what our baby will look like, but only if a girl of course.

Daughter most likely to be twins with our soon-to-be child (according to Ben):  Lindsey & Gerald & Juna.  Even though both Lindsay and Gerald are in school right now, Lindsey constantly offered to take Ben while Thom and I switched shifts at the hospital.  Ben loved going over to their house and playing with their cats and “keeping Juna out of trouble” (although I am not totally sure how helpful he was at that.)   Lindsey would text me to say what days she was available to watch Ben if I needed it. 

Izzy and Ben

Most inspirational/coaching e-mails:  Amy Riley.  She rocks.

Best chicken naming–Izzy.  Izzy really really wanted us to name our baby, “Daphne”, like the girl in Scooby Doo.  Since we already had a girl’s name picked out, we used Daphne as one of our chicken’s names (we have four babies in our basement right now if you were unaware.  Imogene, Daphne, Tacky, & Blanche are their names.  They are going through that awkward pubescent phase right now and should be producing eggs by the fall.)

Best at planning a playdate for Ben–Lesly.   Izzy and her mom, Lesly took Ben on a playdate to Bounce U and for ice cream.   I think Lesly realized that for Ben going on a playdate with one of Ellie’s classmates would be just about the best thing that could happen to him (besides meeting a real live dinosaur or creating a robot or life sized train.)

Everything is rolling along smoothly here.   Plans are to start chemotherapy today.  We will come to the hospital every Monday or Tuesday morning for chemo for 52 weeks, no breaks.  We are hoping to have Ben go to Tyler’s Place while Ellie is doing chemo each week.  That means at this time next year, we will be done.  Ellie has not been sleeping as well at night, the nurse’s coming in to do their job certainly does not help at all.  Now that she is feeling better, she is a bit bored being here and missing her room.  At one hospital stay we played this game where we listed the silliest things we missed from home (i.e. the toilet seat or the sticky stuff on our living room floor, etc.)  Ellie suggested we play that this weekend but could not think of one funny thing that she missed from home.  Instead she said, “But I do really miss my room.”  I imagine when we do go home (eta Tuesday afternoon) we will not see her leave her room for several days.  Ellie continues to make great strides in gaining back her walking, standing, but is having struggles with standing from a sitting position.  And we haven’t even tried stairs yet (that’ll be a fun at home experiment.)  Again, I am amazed at her ability to get it all back so quickly. 

Ben is super excited because not only did he get to go to Tyler’s Place this morning, BUT he gets a playdate this afternoon with our great friends Cynthia and Caitlyn.  Caitlyn is so cute she can only say, “Ben Kennedy”, not just “Ben” by itself.  I just wish the playdate could be recorded because I find 4-year-old conversations highly entertaining.  All that honesty and exuberance.  I think for him going home will actually be a bit of a let down.

Kirk playing tee-pee.

Great big Happy Birthday to my baby brother, Kirk today.  He turns 31.  When we lived in Chicago, Kirk could not pass a homeless person without giving them some money.  Once during college I came to visit him and he took me to my favorite college haunt, TCBY and bought me my favorite yogurt at the time, peanut butter.  Little did I know at the time that he spent his last few dollars to buy me the TCBY.  And he did not at all care.    That is the kind of guy he is, so generous, he would give you his last dollar without letting you know it.  And he is one of the most determined people I know, when he sets his mind to something you can bet your bottom dollar that he is going to make it happen.  Oh man do I ever love that guy.  The only thing that would make it a better Kirky birthday would be to be with him (eating cake of course). 

Last night Ellie’s sodium hit 177 (normal range 135-145), that’s an all time high for her.  She was also dropping a lot of water (diabetes insipidus or water diabetes).  Making some adjustments today to correct that, although this does very much seem to be a moving target. 

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.

As some of you know, Ellie’s tumor has grown significantly since her last surgery.  She is scheduled for a more aggressive resection on February 16th, followed by chemotherapy.  I was not terribly shocked by this news.  After watching Ellie slowly slowly deteriorate this last fall, it seemed like something had to give.  But the bummer is having to be the one to spread this news.  My sister wants me to believe that this news has no impact on others, as a way of protecting me from this additional stress.  I know that it does impact others, just as I have been impacted when I hear stories of people I love not feeling well or undergoing surgery or whatever. 

The thing that strikes me is how so incredibly complex the emotions that I swing through throughout the day from despair, to relief at being able to do something, to gratitude for having another day with my family, to worry about what will happen, what will our lives look like for the rest of the year?  How will we cope?  How will we not wear everyone else out around us who are trying to support us?  And I think about how being in the hospital is all of these things too.  Complicated.  Yes I have moments when I laugh.  When I cry.  When I don’t smell so sweet (oh, yeah, that’s Thom).  I want to go into this experience being fully authentic and experiencing each experience as they present themselves.  During our last hospital stay, we naturally, ran into some hospital personnel that we had not seen in quite some time.  When they asked how we were doing, I said in a fake perkily way, “GREAT!”  Then I thought, “No, not GREAT!”  It was weird because the people asking me were wheeling a boy who was sedated and intubated to an MRI or from an MRI and another child with numerous broken bones had also just been wheeled into an MRI while sedated.  I don’t know exactly why but seeing these children in this condition just struck me as so incredibly odd.  How can we do that?  It seemed both amazing and dreadful all that same time.  Complicated.  Like I said, that’s why all the soap operas are set in hospitals.  The Drama. 

For me sometimes the anticipation of an upcoming surgery trying to figure it all out beforehand (impossible). Those moments when all is quiet and I am left with all the swirling twirling thoughts of what if, what will be, how can it be, what I want to get done…then suddenly sleep seems like a looong time coming.  I guess, once again, it is practice in appreciating and enjoying today, even if that means allowing some of that fear and anxiety to just be with me.  I keep reminding myself, “There is no surgery today.  There is no chemo today.”  I’ll just have to take it step by step and trust that we will figure it out along the way.

Ellie at the zoo with her class last year.

I think before I had children I had this delusion of my children being these little vessels to which I would pour all of my wisdom and knowledge.  I laugh at this former version of myself, so naive, so confident.  Now I see how so much of the wisdom flows  from these two amazing beings. 

Here are a few insights Ellie has had for me (I know some of you have already heard some of these, so you have my permission to skim…)  One day Ellie was singing a song about how much she loved herself and she suddenly stopped and said, “Wouldn’t it be funny if I were singing a song about how much I hated myself?”  It struck me, thinking about how many of us ARE walking around singing a song about how much we hate ourselves, how this inward song could pepper every aspect of our day.   When I shared this with Ellie, that sometimes when people do not love themselves they do things that are not so nice to other people and she was downright shocked that this could be so. 

Another day Ellie pondered how funny it would be to talk about all the things that bugged us.  Again I was struck, how often we see someone and begin to discuss all the things that are buggin us.   And then we wonder why we are feeling annoyed. 

Ellie smiley in class last year.

Ellie has been into the concept of “jofillage” (joy+filled+village).  This is when Ellie is so happy that she feels as if she is living in a village, where everything seems filled with joy.  That is where she lives most of the time (rather than in sick village or brain tumor village).  I was pondering how my brother-in-law was worried about how sad it would be to work at St. Jude’s hospital.  He discovered that it is actually a jofillage.  The children who are there are little heroes inspiring everyone who works there to be their absolute best from the person who cleans the floors to the nurses to the lab techs and doctors.  

I heard this Josh Groban song called, “You’re still You” there is a line that says something about even after all you’ve been through, “you’re still you.”  That is what I feel about Ellie that she is still the sweet, angelic little girl even after all the surgeries, pokes, chemo, not feeling well.  Even with this last bought of not feeling well she rarely complained, it barely registered on her radar as a “problem” that she could not stay awake or stop drooling or remember or concentrate.  She just kept right on being herself as much as she could. 

My all time favorite Ellie words:  Fabulappy (Fabulous + Happy)

Joyburstish (so filled with joy that it is bursting out of your body)

Oh that Ben!

When Ellie was in the hospital, Ben was trying super hard to “cheer her up” by telling her jokes, doing little dances, whatever he thought it would take.  At one point, while Ellie was sleeping in the ER, Ben suddenly turned on the light switch and announced, “Shite and Rine!” (rather than the more popular version, “rise and shine”).   

At one point, Ben told me that he had the “solution”.  He thought that the reason Ellie was in the hospital was because she only wanted to eat cookies (and barely that).  He got this idea because he and I often discuss how well he will feel if he only eats sweet, sugary foods.  During a moment of exasperation,  I had announced that I just did not feel like a good mom if I was not at least offering my children a variety of foods.  Now quite often

The bath fish.

when Ben is eating something he thinks I would want him to eat such as fruits or vegetables, he will shout, “Do you feel like a good mom to me?”  He tries so hard to spread his joy in so many different ways throughout the day. 

Finally, Ben has been noticing the things he “is” lately.  For example, if we are in pottery class, he will suddenly declare, “I am an artist!”  When he is cooking, he is suddenly a chef.  When he is cleaning, he is a cleaner.  I just love how he is collecting all of these ideas together it seems so expanding, allowing him to explore all that he is, all the many avenues that are possible.   I love how it does not even occur to him that he could not add another aspect of his being.  It has made me re-think my days, “Hey I am a driver!  Hey I am a laundress!  Hey I am a chef!  Hey I am a reader!”  How wonderful to have these little wisdom givers right in my very own home and for free (pretty much).

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.

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).