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).