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.

When I grow up I wanna be like Ben

[caption id="attachment_2846" align="alignright" width="300" caption="Ben and his favorite chicken, Chip."][/caption]

So those of you who have not heard, Ben adores kindergarten!!  The first day of riding the bus, Thom described as a bit surreal.  He said it was so strange putting Ben on the bus, essentially filled with strangers.  Ben hesitated before getting on as he realized that Thom would not be going with him.  Then when he boarded the bus, he looked around, wondering where he should sit. 

After his first day, he inquired when he would be allowed to go back to kindergarten.  We told his teacher, Ms. Heummer, that our main goal for Ben this year is to maintain his love for learning and establish a love for school. 

When Ben arrived home after his first day, I inquired if he had played with his great friend, Val, at recess.  He explained that Val was already playing with someone else.  I asked if he found a child to play with and he explained, that no he just played by himself.  Just nonchalantly.  I suddenly wished that I could go to a party and feel ok even if I didn't know anyone.  How freeing it would feel to not feel compelled to "fit in" to find someone to talk with to feel a part of the crowd.  I loved that Ben had absolutely no discomfort in playing by himself when he did not see another child he felt compelled to play with.  I would love to have that kind of confidence and comfort in my own skin. 

Now when I pick Ben up at the bus stop every day, he tells me that he sat by a friend.  Some days it takes him longer to deboard the bus because he has to make sure to give his new friend a hug before he leaves.

Meditating

[caption id="attachment_2810" align="alignleft" width="300" caption="oh no, not clean up time!!!"][/caption]

One day last summer, when I picked Ben up from the YMCA, he told me that he had meditated during daycamp.  Now you all may be thinking that Thom and I taught him how to meditate, but no, he actually learned it, where he gains most of his information, from a movie, in this case, Kung Fu Panda.  Later on, I inquired when he had decided to meditate.  He said, "During clean up time."  I said, "Oh, so what did your teachers say?"  He told me they were suggesting he come and help with clean up.  He showed Thom and I how he meditated, which was by sitting cross legged with his hands together, saying, "Inner peace" repeatedly.  I guess that is one clever, and somewhat peaceful (at least for him) way to get outta clean up time.

The gift that keeps on taking...

[caption id="attachment_2805" align="alignleft" width="300" caption="More baby pics, this time of Ben"][/caption]

In Michael J. Fox's most recent book (A Funny Thing Happened on the Way to the Future, Twists and Turns and Lessons Learned, April 2010), he describes his Parkinson's as "the gift that keeps on taking..."  What a totally apt way to describe a disease, particularly one like Parkinson's.  Yes, it adds dimension and depth and gratitude where you never expected it.  And yes, it also provides loss that you never imagined experiencing. 

The gift from this year has been in part the appreciation I feel for the small things that we do every day without thought.  I mean recognizing that walking up the stairs can be a major accomplishment.  Getting out of the bathtub takes a lot of strength.  Oh boy and the sweet juiciness when all of it starts coming back!  And the desperation when it recedes once again. 

Things have been backsliding a bit as of late.  Ellie has been having more seizures (about one a week).  Seizures where she is fully cognizant, but her body is convulsing.  Very different from what we have seen previously.  We went to the endocrinologist on Thursday and discovered that Ellie is once again gaining weight at a rapid pace (called hypothalalmic obesity).  She has become interested in

[caption id="attachment_2842" align="alignright" width="300" caption="Lotta with open eyes!!"][/caption]

eating again, which she lost last year, which adds a whole new dimension to controlling her caloric intake.  One way to control the weight gain is through exercise.  So today Ellie and I began to walk to Blockbuster, which is over a mile each way.  Ellie was struggling.  Not only was she having a challenging time feeling as if she was going to fall, but she was having a hard time even standing straight.  Drooling mightily all the way.  And I am ashamed to admit that it just made me mad.  Mad mad mad that she has to struggle so.  Mad that she has endured so many surgeries and chemotherapy and still can't take a walk.  I want my money back mad! 

Then Ellie tripped over a crack in the sidewalk and landed face down on the pavement.  As she struggled to stand, she wailed at the top of her lungs as if her very heart were breaking.  She finally righted herself, telling me that she needed to go home because her knees were hurting.  When she fell, was I compassionate, kind, understanding?  Helpful even?  Nope.  Just mad.  I couldn't believe that she had fallen again.  Because you see she fell the day before at St. Vinny's. 

[caption id="attachment_2843" align="alignleft" width="225" caption="Lotta and I catch a nap."][/caption]

My aunt Suzanne sent a package with clothes for Lotta and cash for Ben and Ellie (10 bucks a piece, do you know how much you can purchase at St. Vinny's for 10 bucks??  A LOT I tellya.)   At one point in the store, we were perusing the infant clothing.  I asked Ellie to come stand beside me so I could better see her.  As she started to walk towards me, she tripped over a display and landed face down on the hard floor.  She began to wail.  The woman standing in the section asked what she could do, should she hold the baby for me (the baby was strapped on in a carrier) or should she help Ellie.  She helped Ellie to sit up and then helped her into a standing position.  She informed Ellie that she was a doctor and checked her aching knees.  And I thought, well if you are going to fall, right in front of  a doctor I guess would be the best place to do that.   

So all afternoon, I have been struggling with disappointment, discouragement, dismay--with myself for not being the kind of mother I wanted to be when Ellie fell AND for having Ellie continue to struggle with all of these issues when I am so ready to move on.  So that's the gift that keeps on taking.  I know that all of this pushes me continually to become more, to make my life bigger.  But dagnabbit if there aren't times  I just wanna lay on the beach, easy and cool, reading a book.  Today my wish is for ease for my sweet Ellie who continues to try even after she falls down again and again.

Finally, Ben gets his first surgery outta the way

[caption id="attachment_2821" align="alignleft" width="300" caption="Big ferocious hug for Max."][/caption]

As many of you know, I took Ben to the dentist a couple of months ago when he began complaining of a tooth ache.  The dentist discovered 8 cavaties and we decided to have Ben undergo outpatient surgery to have all 8 corrected at once.  The earliest we could be scheduled for surgery was September 3rd. 

On Monday and Tuesday last week, Ben began to complain that his cheek was hurting.  Well, I  readily admit that I would make a terrifically terrible nurse.  I just don't have the patience for it.  At all.  I especially don't have the patience for it in the middle of the night alternating between Ben waking up screaming/crying in pain to Lotta waking up.  Well, by Tuesday afternoon, I noticed that Ben's right cheek had become swollen.  I googled what this could possibly mean and immediately abscessed teeth came up.  Apparently, if a tooth abscesses it can spread to the jaw and then to surrounding soft tissue.  We started Ben (0nce again) on antibiotics with the warning that if the swelling spread to his eye (yes his EYE) we would need to bring him in to the dentist immediately. 

[caption id="attachment_2826" align="alignright" width="300" caption="Ben makes funny faces with Lotta."][/caption]

Ben was having his surgery at a different hospital than where Ellie has had her surgeries.  They called on Thursday to tell us that Ben could not eat or drink after midnight.  Although he could continue to have clear liquids until 11am.  Now his surgery was not until 3:30pm.  That is a heck of a long time for a 5-year-old who eats constantly to be denied.  I was pretty grumpy about the whole thing (Thom & Susan would probably say very grumpy) because the midnight cut off is the same one used by the patients who have to arrive at the hospital for morning surgery.  To me that feels like a rule that is easier for the hospital to give out but certainly not easier for the parents and children having surgery.  Made me realize how completely spoiled we are at UW Hospital, where it seems, for the majority of our interactions, that the child's comfort is put in a close second followed by health/safety.  I knew that I needed to work past my anger and line up with this idea or it would be that much harder for BEN which is exactly what I did not want.  Fortunately, his mouth was hurting enough that he was not all that interested in eating anyway.  Fortunately,  Thom was completely certain that Ben would have no trouble with the no eating/drinking restrictions. 

Ben and I discussed several times this week how he would not be able to eat or drink on Friday.  Unlike Ellie, I think it helps Ben to prepare himself.  At one point on Friday, Ben told me that he was glad he couldn't eat or drink because he would rather play anyway.  Thom took the day off so he and Ben headed to the library as a distraction.  The only time he complained of feeling hungry was when he arrived home from the library, the fun of not eating had worn off.  But it was time to leave for the hospital at that point anyway. 

I stayed home for Ellie's drop off from school.  And because I try to avoid hospitals with a newborn if at all possible.  So Thom was keeping my abreast of what was going on via text/cell phone.  Ben informed the hospital staff that he was in fact, the "best patient".  He can be quite competitive so if he sees he can do something "better" than Ellie he will totally go for it.  Believe me, I have not been above working that angle on more than one occasion.  After Ben went into surgery, Thom called to tell me how Ben leaving for surgery was pretty awkward.  Thom explained that he was told he would get to meet up with Ben before he went into surgery but instead, Ben, crying and fearful was carted off to surgery by himself.  I was livid.  I mean it is just not a good idea to mess with my children when I have major maternal hormones coursing through my veins.  I called the hospital ready to let lose.   What actually happened is I ended up sobbing as I requested that Thom be allowed to see Ben as soon as Ben was out of surgery.  I FEEL VERY STRONGLY THAT 5-YEAR-OLDS SHOULD NOT HAVE TO FACE THE PROSPECT OF SURGERY ON THEIR OWN!!!! See how strongly I feel about that with the all caps and exclamation points??  And if by complaining about this I can prevent another youngster from going through the same experience I am going to go for it by all means.  I mean at UW hospital where Ellie has had what, 15 surgeries (Thom stopped counting this year), we have been allowed to be with her until she is unconscious.  Every single time.  So we know this is not at all out of the realm of possibility. 

Ben ended up with one tooth removed, several crowns and a root canal.  Thom said when he was first coming to after surgery he was extremely unhappy, mostly from the anesthesia not from pain.  But he quickly came back to baseline.  When he arrived home, I asked how it had gone.  Ben immediately started unloading a bagful of stuff--a blanket, socks, 3 teddy bears, his tooth in a jar, a sippy cup, a barf bag.  He told the nurses he had decided to collect teddy bears and then he proceeded to collect 3 of them from various hospital staff.  I asked Ben if he had been sad or scared about the surgery.  He said that he was for a minute, but then he went back to having fun.  He told Thom that he enjoyed his afternoon nap.  Which has not at all translated into napping today, but you gotta keep the dream alive, right?  And when he got home he ate and ate and ate, I am quite sure he was able to get all of his calories in for the day in a couple of hours last night. 

Ben is doing great today (Saturday) and has only complained once of pain.  He has spent some time feeling around in his mouth getting used to the new sensations there, both with his tongue and with his fingers.  I think the thing I admire the most is Ben's ability to recover so quickly from his big day, to decide that the sad/scared time is over and to go back to having fun as quickly as possible.  To strive to be the best patient possible.  To make up for lost eating time.  To not get caught in any drama but remain steadfastly commited to the story that feels the best.