home again back again...

Tuesday afternoon we went home from the hospital.  Ellie was doing so well we were confident she could go to school on Wednesday. 

Wednesday morning when I woke up, I found Ellie trying to stand herself up in her room.  She was extremely unsteady and her arms were flailing, she just did not seem to have the strength to get herself up.  She scooted herself downstairs.  She was cognitively slow and a bit incoherent.  Ellie had not slept in 2 days so I sort of attributed her weakness and instability and cognitive misfires to extreme sleepiness.  We decided to go get labs just to check her levels.  When we arrived at the hospital, Ellie became unresponsive.  I told the receptionist that I thought we needed to talk with one of our doctors, I wasn't sure which one.  I knew this was a neurology issue, but I also knew that neurology is the most difficult department to get ahold of as there seem to be less neurologists here than our other subspecialities.  Our oncologist came to the rescue.  They set us up in a room and secured diapers for a quite stinky Lotta.  They started to check her vitals and were unable to get either a temperature or a blood pressure reading.  Finally they were able to get a reading on her temperature at 83 degrees.  Her heart rate was around 40, sometimes falling below that.  Dr. Puccetti suggested we go to the PICU so that they could monitor her more closely.  Ellie was extremely sad about being back in the hospital.  Once we arrived in the PICU, ellie was covered in a warming blanket, given a stress dose of steroids, and  started on an antibiotic (just in case).  An EKG and an EEG were both administered, neither one showed any problems.  Once we warmed Ellie up, her heart rate improved.  As I sat watching Ellie's heart rate oscillate between the mid 30s up to the 40s, with the apnea alarm sounding, I was completely amazed that her body was surviving all this. 

Today, Ellie is back to her regularly scheduled programming, talking up all the doctors and nurses and volunteers.  What a contrast from yesterday!  Rumor has it we may be going home tomorrow.

Shout outs

[caption id="attachment_2892" align="alignright" width="225" caption="Ben as a primate (gorilla maybe?)"][/caption]

When Ben and I went to St. Vinny's on Sunday, we found him a 3-wheel scooter.  He has been asking for a scooter after seeing a bunch of the neighborhood kids on scooters.  So when I saw one at St. Vinny's, I knew that puppy was coming home with us.  It even lights up in the back whenever you ride it.  It's one sweet ride.  Unfortunately, Ben had ridden his bike to St. Vinny's, so I was wondering how we were going to get the scooter home, along with the baby, and the new baby's clothes.  About 2 blocks from our house, I was pretty much ready to throw the scooter down in disgust and go on with my life.  And I was becoming a 2-year-old when Ben would shout how he was "winning" beating me in the race home.  Hello, I'm back here carrying a baby, a backpack full of clothes and dragging a scooter.  Suddenly, I looked up there was our neighbor, Chris, riding her bike.  She should have been back lit, like an angel or superhero, arriving at just the right moment .  She rode over to us and asked if she could help us home.  At that point, I was not above allowing that to happen.  Even though she was on the way to meet Kathy at a festival, she took the time to help us out, never making us feel as if she was in any way put out.  That's the way it is with Chris and Kathy they are continually willing to jump in and help out in any way they can.  Like this last week, after our ambulance ride, we had pretty much abandoned the trash can on the curb from trash day in all our hospital commotion.  Well, Chris on her morning walk with their Maltese, Chloe, quickly put our trash can back.  It was like she didn't even really want me to see her doing it.  Ben loves going to their house for a visit.  I am so greatful they are our neighbors. 



[caption id="attachment_2893" align="alignleft" width="225" caption="Ben as a polar bear."][/caption]

Our neighbors Lindsay and Gerald, you may know them as the parents of the infamous Juna.  Even though they had plans on Saturday night, they still agreed to watch Ben so that Thom and I could switch do our hospital switch over the easiest possible. 

Big shout out to Cynthia for the super fun visit last week and the many gifts she brought (particularly useful were the many crayons!)  And another shout out to Brittany for her visit and yummilicious cupcakes on Friday.  They kept us fed all weekend long.  Finally a thanks to Sue Zwart, 3rd grade teacher extraordinaire for dinner tomorrow night.  My mouth is already watering...

Ellie is doing so much better ("bed-der" as Ellie likes to say as she is sitting in bed) talk is of going home tomorrow.

Maybe maybe not

[caption id="attachment_2875" align="alignleft" width="225" caption="King Ben!"][/caption]

This morning something mysterious was found on a chest x-ray of Ellie's lungs.  (I suspect the spot was pancakes, but no one will back me up on that.)  She had been coughing a bit.  Then she ran a fever.   Her sodium is on the rise (156, average range 135-145).  Thus all hope was lost of us actually going home today.  Ben and I decided to get a little exercise and retail therapy while taking advantage of St. Vincent de Paul's new Sunday hours.  (I found some exceedingly cute baby clothes, which Ben helped me pick out.) 

By the time Ben, Lotta, and I arrived at the hospital, Ellie had made a turn around was sitting up in bed and her fever had broken.  Dr. Iskandar (neurosurgeon/king of the hospital) stopped by to check on Ellie and it was as if this morning never even happened.  Which often seems to be the case when we see Dr. Iskandar, Ellie's doing horribly, we see Dr. Iskandar and suddenly she is completely back to her perky self.  I thought it might be helpful if he moved in with us to see if that trend continues.   For some reason, he laughed at that suggestion.

Celebrity Status

[caption id="attachment_2871" align="alignleft" width="300" caption="starring lotta joy!"][/caption]

I have totally been feeling like a celebrity this hospital visit.  People I do not recall meeting previously keep coming up to me and saying, "Oohh you had the baby!!"  I guess that really makes Charlotte more the celebrity than me, but I'll take what I can.  Ellie is doing so much better today there is talk of going home tomorrow!  Yeah!

holding steady

Just waiting to do another EEG this morning to see if decreasing the old anti-seizure med (Trileptal) to increasing her new anti-seizure (Kepra) has had an impact on the way her brain is functioning.  Ellie keeps saying things like, "Should we go pick Ben up now?"  "I don't wanna go to the hospital".  So she is still a bit out of it.  Otherwise, she was doing better when I arrived this morning, she was even speaking more clearly.

It's a Beautiful Day

For Valentine's Day, I chose a song  that reminds me of each family member as their special "Valentine".   Ellie's song this year is by India Arie and it is called, A Beautiful Day.  Here are the lyrics: 

Life is a journey, Not a destination,
There are no mistakes,
Just chances we've taken
Lay down your regrets cause all we have is now

Wake up in the morning
And get out of bed
Start making a mental list in my head
Of all of the things that I am grateful for

Early in the morning
It's the dawn of a new day
New hopes new dreams new ways
I open up my eyes and
I open up my mind and
I wonder how life will surprise me today
Early in the morning
It's the dawn of a new day
New hopes new dreams new ways
I open up my heart and
I'm gon' do my part and
Make this a positively beautiful day

La la la la la la la la la
It's a Beautiful Day

Life is a challenge not a competition
You can still smell the roses and be on a mission
Just take a moment to get in touch with your heart
Sometimes you feel like you've got something to prove
Remind yourself that there's only one you
Just take a moment to give thanks of who you are
Early in the morning
It's the dawn of a new day
New hopes, new dreams, new ways
I open up my eyes and
I open up my mind and
I wonder how life will surprise me today

Early in the morning
It's the dawn of a new day
New hopes, new dreams, new ways
I open up my heart and
I'm gon' do my part and
Make this a positively beautiful day

La la la la la la la la la
It's a Beautiful Day

Let's make this a wonderful
Let's make this a powerful
Let's make this a Beautiful Day
It's a Beautiful Day

Life is a journey,
Not a destination,
There are no mistakes,
Just chances we've taken
Lay down your regrets cause all we have is now

Every day I'm with her Ellie reminds me that it is indeed, no matter, what a beautiful day.  Today Ellie is doing incredibly better than yesterday.  She has been awake for much of the morning, able to carry on a conversation, with much less seizure activity.  The neurologist came in last night and also this morning to tell us she has been wracking her brain trying to come up with a solution for Ellie.  She explained that Kepra (the medication Ellie was on a few years ago that seemed to cause more seizures) is the very best drug they have available, with the least severe side effects.  Some of the other medications would not work for Ellie because of Ellie's numerous other medical complications.  For example, one of the other meds causes lowered sodium levels.  Another one may cause weight gain and liver damage.  Another one (rarely, but still) may cause a life threatening skin rash.  The neurologist explained that Trileptal (the anti-seizure medication she has been on) could actually be causing the seizure activity she is having, because this side effect can occur at any time while taking this medication.  The doctor felt confident that Ellie will do better on Kepra.  Basically the plan is to increase the Kepra as we ween her off the Trileptal.  Her seizure activity has decreased so much that there is even talk of moving us to the oncology ward today.  Quite an abrupt change from yesterday.

Don't cry for me Argentina

[caption id="attachment_2859" align="alignright" width="300" caption="Here is what we would like Ellie to look like before we leave the hospital this time!"][/caption]

Ellie started having more seizure activity about a month ago.  The seizures now look completely different, with part of her body convulsing but Ellie still able to talk and answer questions appropriately.  Our neurologist suspected that our current anti-seizure medication (Trileptal) might actually be causing the seizures.  He suggested switching to an anti-seizure medication (Kepra) that we tried several years ago that also seemed to cause her to have seizures.  We started increasing her Kepra dosage this weekend and Ellie took a sudden, sharp unexpected downward turn.  She was totally out of it, hardly able to stand, drooling a lot, slurring her words, and the dreaded falling down. 

Monday and Tuesday we kept Ellie home from school because I could not imagine any kind of education happening in the state she was in.  We decreased her Kepra dosage.  Ellie on Tuesday morning had a seizure.  Or more likely, she had several seizures.  She then fell asleep which is pretty typical after a seizure.  When Thom returned home, we went to check on Ellie.  We discovered that Ellie had wet the bed and was not arousable.  We called 911 and an ambulance was dispatched to take her to the hospital. 

But before the ambulance arrived, a fire truck arrived.  Then the ambulance.  It caused quite a commotion on our street.  Our super neighbor, Kathy came over and collected Ben for a storytime at her house while all the emergency crew was on hand.  Another unknown to us neighbor stood outside of our door  praying loudly.  Then our neighbor, Carl and his girlfriend, Coleen asked if everything was ok.  Afterwards I thought about how we have done all this before, but without the ambulance and fanfare, just quietly loading Ellie into our car and driving to the ER. 

Once again the responses of my children were quite contrasting-.  When Ellie came to a bit, she was most unexcited to be heading back to the hospital.  Ben was super excited at all of the commotion.  Lotta was exhausted and slept through the whole thing.  I kept thinking, "I can't believe how many people are seeing my incredibly messy house!!" And I'll have to inquire what thoughts were going through Thom's head.  I imagine something more appropriate than worrying about the status of our home. 

Not surprisingly, Ellie was admitted to the hospital last night.  An EEG was conducted and showed that Ellie was having many small seizures along with a pretty intense one at 4:30am.  A quick brain MRI was conducted this morning which showed her shunt is still functioning.  Basically we are thinking that the anti-seizure meds may be causing the seizures and other symptoms we have been seeing.  Now we will be working to ween her off the meds and start her on some new, better medications. 

So don't cry for me Argentina, I'm just thinking of this as our Sehyhefiuy9uiruptember stay.  And fortunately for us, we did NOT have an August stay even though we have averaged one stay a month for the rest of the year.  I feel quite confident that we will leave the hospital with Ellie feeling better than when we entered.  Because really it would be highly challenging for her to live her life the way things were going.   So being in the hospital for a few days to get all this sorted out feels well worth it.