an "ellie lesson"

[caption id="attachment_2797" align="alignleft" width="300" caption="Ellie right after birth, looking wise already."][/caption]

Here is a super sweet e-mail my Dad wrote, which I am sharing without his permission (hope that is ok, Dad! I thought I'd let you help me write this blog.)

"I went to the dentist today and thought I would have to go back for extra work as I had been a bit tardy in dentist exams the past few years.  I got xrayed and cleaned and then was told I was all set and to come back in 6 months.  I said "I'm so happy" just as I have seen Ellie do.  I told the receptionist I was having to restrain myself so I would not break into a joyful dance.  What a great influence Ellie is.  Love dad"

and isn't that exactly how Ellie would want to spread her joy?  It just brightened my day to read it and I hope it brightens yours too.  Then, as Ellie says, we'll have "galloping happies". 

Ellie slept all night last night and her sodium is back in the normal range.  During physical and occupational therapy this morning Ellie was much more lucid than she has been in the last couple of days.  It was so amazing to have her "back".  We were physically moved to the oncology floor.  Alas, the lucidity did not last.  This afternoon, she is back to not knowing what she is doing or seeing.  Sort of in her own world, where she is back home playing with her books and peeling crayons.   

Awake Beauty

There are certain moments where I just feel so heavy like I can't continue on.  Walking by a room in the PICU, I saw a mother holding a baby younger than Lotta, gently stroking her baby's head.  She was fully suited up with a mask on.  It made me want to weep.  But then I feel like if I start weeping, I will be unable to stop.  I might just melt into a pool of butter on the floor.  Other times I can turn it off and not feel so emotionally at the edge.  Then I think of the times when Ellie feels like she cannot get out of bed, and I remind her that if she says that she might believe it.  And I remind myself that I absolutely can do this and I will do this and one day I will look back on this time and be amazed at what we were all able to pull together and do.  Right now, in the middle of all this, it feels very messy and dramatic.

This morning as I walked up to Ellie's room, the fellow was finishing up.  He said that his conclusion was that the symptoms we are seeing now is merely "disease progression."  We have explored every avenue and have done everything we can do for her right now.  He recommended that we move to hematology/oncology service. 

Our neurologist however, is convinced that Ellie is still in recovery mode from 4 major brain surgeries and chemotherapy.  He thinks that the change in cognitive function may be due to lesions in the frontal lobe (the part of the brain responsible for rational thinking) from her previous surgeries.  He also thinks some of the fluctuations in her heart rate may be due to the second incision site (at the back of the head, near the brain stem),lesions to that area of the brain. 

Ellie is back to being awake for days on end, which seems appropriate after being asleep for days on end.  She had a hard time coming out of the anesthesia yesterday after her MRI and was doing some heavy duty hallucinating afterwards.  This morning she has not been talking much, just mostly staring, as that is about all she can do with this level of exhaustion.  Her heart rate is again fluctuating between the 40s and 50s and occasionally dropping into the 30s (that is when I get nervous).  Her heart monitor is on silent mode because the alarm is pretty much constantly beeping.

ch-ch-ch-changes

[caption id="attachment_2959" align="alignleft" width="300" caption="baby ben"][/caption]

ellie's sleeping beauty turned into wakefulness.  her low salt turned into high salt.  her body temperature began to fall, bringing her heartrate with it.  she has been much more consistently disoriented today.  she kept thinking she was at home, then becoming extremely sad upon realizing her whereabouts.  the mri was finally completed after some initial delays, have not heard back from anyone the results.  ellie's body temperature started to drop which seemed to be bringing her heart rate done with it.  she quickly warmed up, but her heart rate has remained on the low side (right now in the upper 50s and 60s).  lotta does not wanna blog anymore right now.  gotta go bounce and walk.

Sometimes these "spells" are tricky

[caption id="attachment_2954" align="alignright" width="300" caption="Ellie at the hospital in Chicago."][/caption]

Ellie did not sleep last night, making up for lost time I suppose.  She is definitely more awake today than yesterday.  She continues to have moments of disorientation and loss of vision.  The neurologist (Dr. Hsu) suggested that because vision is processed in the back of the brain, perhaps the signal is getting interrupted somewhere along the way.  There are vision tests that can test how long it is taking the signal to travel.  We will be doing a full brain MRI (she'll be sedated as it takes 45 minutes to an hour or more) to get a more accurate view of her brain.   Right now Ellie is peeling and breaking crayons in bed.

The spell is broken!!

Ellie is awake!  She has even already eaten 2 chocolate chip pancakes (a hospital speciality) and 2 sausage links (her favorite shape for a sausage).  She is somewhat sad to be in the hospital but oscillates back to feeling jilled.  Still pretty sleepy and having some vision difficulties.  Just so so happy clappy snappy to be able to talk with her again!!!!

Sleeping Beauty

Ellie continues to sleep, even after a super duper dose of rescue steroids this afternoon.  It suddenly hit me during a conversation with endocrinology that she is sleeping beauty--we just have to figure out how to break this "spell".  Her left lung has started to collapse and the PICU team is monitoring her breathing closely.  The PICU resident told me that any other patient with this level of unresponsiveness he would've intubated (the tube down the throat to help with breathing) a while ago.  The Endocrine team is not totally convinced that her drop in sodium level is causing all the sleeping, they feel that the sodium drop may be a symptom of something bigger going on in the brain.  At the end of this day, we still have as many questions as we did at the beginning.  And now we are coming up on 48 hours straight sleeping.

acknowledgement for the unacknowledged

This morning was a bright crisp autumn morning as I walked Ben to the bus stop.  On my journey home, I noticed a possibly homeless man I have seen quite often in our neighborhood.  His pants have only one leg that reaches to the ground, the other cut off at the knee, and he wears a tattered hat.  Sometimes when he walks down the street it seems as if his brain gets stuck on doing one activity obsessively.  I have wondered how imprisoning that must feel to have your brain be stuck, forcing your body to repeat an action over and over.  This morning as I walked by, he seemed in a better state of mind, I said, "Good morning," as we do here in Madison.  He responded in kind and then said, "Thank You."  What struck me was the thank you, it was as if he was not used to someone greeting him and he truly felt appreciative for the acknowledgment.  Made me feel both happy to be a part of that moment and sad that this did not seem more of the norm for him. 

On Saturday night, Ellie pretty much passed out at 7pm.  She continued to sleep on into the day on Sunday.  This is not completely abnormal for her, particularly since she had pulled an all nighter last week.  Around 3pm on Sunday we decided to make sure that we could still wake her up.  During her sleep she had started moaning and crying.  We were unable to arouse her fully.  Thom and I debated whether or not to try to get her to our car on our own or to call 911.  Ben's enthusiastic vote was to "call 911!  Call 911!!!"  For the safety of Ellie, making sure we didn't cause her any further injury, we decided to call 911.  I sort of wish there was an 811--this is an emergency but not a total emergency.  We really just need a ride to the ER, and of course the prompt service we get when we arrive by ambulance is also an incentive.  Upon arrival, Ellie was given, as usual, a stress dose of steroids.  Typically this revives her.  Yesterday it was a no go.  The only thing that seemed amiss was that her sodium was low.  Ellie is still not fully awake this morning, she does moan and cry out when someone is "bugging her"--as she is right now because she is getting another EEG to rule out seizure activity.  She has not opened her eyes and spoken since Saturday.  Her MRI and shunt tap showed that the shunt is still functioning well and there is no sign of infection in her brain.  Dr. Iskandar (neurosurgeon extraordinaire) stopped by to say that she is just extremely sensitive to even seemingly small changes right now.  He said that we could expect at the very least a year of her being more vulnerable.  The EEG technician was just taking off the glue and Ellie yelled out, "OUCH!" as she had her hair combed and she even opened one eye.  Never have I been so excited to hear an "ouch" before. 

Last night, our great neighbor, Chris stopped by with her order for a school fundraiser.  She asked if she could get us anything from our local grocery store.  I said no, right as Ben said, "Moldy bread, clean water, and bananas."  So about an hour later, Chris stopped back by with a bunch of bananas.  So sweet.  Brittany also stopped by and helped me fold some of the mountains of laundry that have accumulated over the last 24 hours.  Thanks to both of these fantastic women!