Sunny Days with Debi

Ellie has been able to sustain her wakefulness on the stress steroids through her g-tube.  Plan is to go home tomorrow late morning (in hospital time that translates to afternoonish…)  Great big thanks to Brittany, Esther, Ms. Mack & Ms. Zwart for their visiting.  And to Esther and Ms. Zwart for keeping us wel supplied with chocolate.  Oh and once again, gratitude to Janna for keeping us well fed throughout.

Dr. Iskandar (neurosurgeon extraordinaire) came by this morning to say that we will continue with Ellie’s stress dose of steroids for the next few days.  Which means we will be here for the next few days.  Drooling is much less than it was and her words are not as slurred.

Apparently there is no going home on stress dosages of steroids.  So until there is a change with that, we will be here.  Ellie’s sodium has been a bit elevated (which means her lips are all cracked).  Heart rate has been much better though.  Ellie is feeling a bit homesick today.

Oh man is that ever sweet...

Yesterday it was sunny and 60.  Tonight it is 40 and snowy.  Yesterday there was talk of going home today.  But it was a no go.   First Ellie was way way sleepy not waking up even when Ben was in the room (that is a rarity, I mean how else is she going to get all of her Ben yelling in for the day?)  Then when we increased her steroids (rescue steroids) to see if that helped her to feel a bit perkier, she did not sleep from midnight to early evening yesterday.  I suggested keeping the rescue steroids high during the day and lowering the dosage at night to allow her to sleep (and Thom for that matter).  The doctors decided to decrease all the steroids all the time and suddenly Ellie was sleeping again and not waking up when we tried to arouse her.  Now we are back on the rescue steroids and waiting to see what will happen.  But again the question becomes if the steroids make her feel better why is her body needing extra steroids.  What stressful thing is happening in there to cause her to need the extra assistance? 

Ellie groovin to some tunes.

Talking with my super sister, Susan,  today I realized that I was holding my breath, anticipating, waiting.   Will Ellie always be like this?  Will she always be drooling, slurring her words?  Will Ellie have difficulty with her vision?  Will we be able to keep her awake without heavy doses of steroids (or maybe latte shots)?   I think there is that desire to prepare myself for whatever possibility awaits us or at least to try.  Because after her last partial resection surgery (the one in April 2008, not the most recent rounds of surgery), there was so much she lost when the communication between her pituatary gland and the hypothalmus was severed.  The whole summer afterwards I was a mess of disappointment, anger, frustration.  Trying to come to terms with what felt like a big fat loss.  Now I wonder will there be other losses to deal with now?  Will I go through the same swirl of emotions this year?  Will there ever be maternity underwear that is actually comfortable is that too much to ask? Ugh. 

But then I thought of sweet Ellie and how even when she was getting the questions wrong the neurologist was asking her (like how many fingers am I holding up or what color is this?), she did not give a hoot.  She was still her happy clappy self.  It reminded me of this song I heard on the radio, “She is Love” because that is what to me Ellie really exemplifies, “love”.  And as my sister said to me today (have I mentioned how fortunate I am to have HER in my life?) that she knew I could handle whatever came along because I was such a superwoman.  And she reminded me of what an amazing teacher Ellie has been to everyone she has come in contact with (not just the medical staff right now.)  So I suppose I just have to take this moment as this moment and know that some things may stay the same and some things may not but no matter what we will find a way to not only survive but excel.  What other choice is there really?

Because I cannot find a photo of Nancy quickly, she probably actually took this picture of Ellie and I on the beach in Michigan.

Happy Birthday to my mother-in-law, Nancy.  The most talented quilter/knitter around.  Seriously, she is gifted.  When I show other crafty/artsy types of folks her work they are astounded, speechless at what she creates.  Not only are Ben and Ellie so fortunate to have her as their grandmama, but she raises superb sons (see Thom as a fine illustration of this).  Ellie loves all of her grandparents and considers them some of her favorite people.  Whenever Nancy & Gene joined us on a trip up north (what’s more north than Wisconsin you may ask, northern Wisconsin, that’s what), Ellie told me her favorite part of the trip without hesitation was spending time with her grandma and grandpa.   Nancy has always treated me as a friend, wanting to share and talk and be girls together.  And she has read every single one of my blogs and brags about them to her friends.  One day when we were visiting and I was grumpy, she said to me, “Are you feeling tired?”  It was just so compassionate to ask me if I were tired rather than taking my grumpiness personally.  We are all so lucky to have her as part of our lives.  Happy Birthday, Nancy/Grandmama!

During her Elmo phase...

Ellie’s heart rate has gone down to the 140s today (we are shooting for 130 at the highest).  She has better been able to stay awake since we increased her steroids (your body naturally produces more steroids during times of stress, since Ellie is not producing steroids we have to provide her with stress doses of steroids when necessary.)  EEG (that’s the one that measure electrical activity from your brain with electrodes glued to your head) showed NO seizure activity, but lots of slower waves (delta) and irritation in the left hemisphere (typical after brain surgery).  No talk of going home, yet.

Smiley girl.

Ellie continues to be way tired, slurring her speech and having difficulty this morning staying awake or even opening her eyes.  She is currently watching Sid the Science Kid (her favorite show because they all have such “crazy” hair.)  This time, Ellie’s heart has been running high, around what you would typically see in an infant (sitting in the high 150s, normal for her age range would be around 130).  We had an EKG and echo this morning to check that her heart seems to be functioning properly.  There is an extremely small abnormality in one of the ventricles that is being investigated further (in any other case they would probably just right it off, but they want to be thorough.)  She is being called tachycardia (rapid heart rate).  She will have an overnight EEG (all these letters are a bit confusing aren’t they?)  to see if she is having seizure activity at night.  So far the EEG has shown lots of slowing and delta waves.  There is some irritability on the left side (due to surgery it is presumed).  But nothing that looks at all like seizure activity.  We are giving Ellie stress dose of steroids to see if that perks her up a bit.  If it does it still does not explain why her body would need a stress dose right now and that would still need to be addressed.  so basically we still have more questions than answers at this point with a couple of hypothesis floating around.  It has been like Grand Central Station around here with doctors and EEG techs and everyone in between coming to talk, inquire, inform.

Ben in orange, not on St. Pat Day.

On a Ben note, we went to Target today for an emergency crayon run (we were on our last box and panic set in).  Ben and I had discussed wearing green today in honor of St. Patrick’s Day.  He wore his green rain slicker in order to be even more green and was a bit concerned that others would laugh at my red coat (think Carmen San Diego here and you will perfectly picture my coat).  Well when we walked into Target, Ben immediately spotted a man with a blue shirt on and Ben proclaimed for all to hear, “That is strange, a BLUE shirt on St. Patrick’s Day!”

Ellie walking with a book in La Grange.

So Ellie started drooling right before she left the hospital last time.  I mean a LOT like get your shirt completely soaked (and sometimes the pants too) kinda drool.  Wange (weird + strange).  Then yesterday she feel asleep at 2pm and slept until 3am.  I think that is the longest she has slept since she was a teeny baby.  We had decided to try school again today.  She lasted an hour before she fell deeply asleep on a bean bag, arms raised above her head and everything.  When I came to get her, she was extremly hard to awaken and was having trouble walking (of course if you were still asleep it would be hard to walk, wouldn’t it?)  Stephanie, Super School Nurse, rolled her to our car in a chair with wheels on it, making sure to hold onto Ellie so she did not slip off of said chair.  When we got home, I did Ellie’s meds and feeds and she immediately fell asleep again.  We alerted the hospital that Ellie was much much more sleepy than usual and of course an MRI scan was ordered to check things out.  It looks like the ventricles are larger (meaning hydrocephalous was likely because of increased pressure on the brain.)  Dr. Iskandar (remember him?  he pretty much rules the hospital as a neurosurgeon) explained that the cysts are filling back up with fluid causing changes in the brain.  He further explained that the surgeries he performed is very injurious to the brain and he speculated that Ellie had had a seizure which led to all the sleeping.  He also mentioned that if the cysts become problematic he can drain them fairly easily without a craniotomy (look that one up if you don’t know it makes me a little woozy to explain it.)  Plan is to stay overnight and see how she does.

The love between Brittany and Ellie

I know I know I keep talking about Brittany.  Brittany Brittany Brittany.  Last year we had the pleasure of meeting Brittany while she was Ellie’s special education student teacher.  As soon as the school year was over, I asked if she could babysit.  Because you see, Brittany has the unique quality of being both a “Ben” and an “Ellie”.  In my brief stint being a mother to both Ben and Ellie it has come to my attention that it seems as if some people are more “Ben” people and gravitate towards him and others are more “Ellie” people and gravitate towards her.  That makes finding a babysitter for two such different children challenging.  Plus, Ben is fairly particular about who he wants to hang with.  Now that we have Brittany as our babysitter, the children beg us to go out so that they can have any evening with their friend. 

I know I have mentioned how when we were in the hospital, Brittany came to visit every day (with the exception of a coupla sick days.)  She did this even though she was working 2 jobs at one point.  And almost every time she would come she would come bearing food or crayons or books. 

One of the things I like most about Brittany is that she is one of the most self-assured, confident people I know (and the amazing thing is she is only 23).  When I mentioned where Ellie’s seizure medications were before one of her babysitting stints, Brittany told me not to worry because one of her childhood friends had had seizures.  So different than the panicked look I would get from other sitters when I would mention where the medication had to go (and I am quite sure I would have had the same panicked look if I had been in their shoes.)  Another extraordinary quality is how Brittany just would not take any of the sadness from the hospital on.  Sometimes, I could tell when a friend would come to visit they would leave sadder than when they arrived.  Brittany on the other hand seemed to leave us happier than when she arrived.  And she never ever looks at us with pity in her eyes because she sees the strength instead.  One evening while Ellie slept Brittany and I just talked and talked, it was as if we had an impromptu slumber party right then and there. 

What a joy it has been getting to know Brittany better and not only having someone we feel so confident caring for our children, but someone whom our children love.

Susan's son, Dariush, just cause he's so cute (like his sisters before him).

A great big happy birthday to my older sister Susan.  My life would not be the same without her in it. 

Ellie’s recovery is taking a bit longer than we initially anticipated.  Apparently 3 weeks of not moving around much is harder to recover from than say 1 week.  Anyway, she has gotten stronger and more able to walk while at home.  She is still working on being able to stand from a sitting position and doing the stairs.  She continues to drool a great deal and seems pretty exhausted much of the time.