Sunny Days with Debi

Ellie on the beach in Florida.

Last night Ellie was so loud that we (and when I say “we” I mean Thom who is on night shift and Ellie) were moved at 2:30 am to our own private room!!  So much space I hardly know what to do with  myself and normal talking voices.  It was an exciting night, Ellie’s sodium jumped up to 170 (not her all time high which stands at 172, again normal is between 135-145).  

This morning when I came in everything I said and everything Ben did caused Ellie to have the giggles.  Made me feel like I was a comedian.  Now Ellie is sitting on the sofa tit tatting with Brittany and peeling crayons.

Ellie was sleepy again today.  Our car has the red “check engine” light on, so a big thanks to our neighbor, Chris for a ride to the hospital.  AND for putting out our trash can on trash day.  Just could not leave Ellie in the room alone to race home and switch with Thom.  Especially after the time she kept calling for me when I was out of the room for only a few minutes.  That would be a LONG 40 minutes for her.   Ellie’s sodium level has continued to be up and down all day, but her diabetes insipidus (dropping her water) seems to be slowing down now. 

The floor is once again full, so we have a roommate.  Apparently their daughter was injured severly in a skiing accident, so they are all going through the shock and drama of such a sudden, unexepected event occuring in their lives.  She has lots of visitors but no room in her small section to accomodate them.  I am working to get us separate rooms for everyone’s comfort.  Just overheard that there are no rooms available tonight on the floor.    I totally feel petty in the grand scheme of things, but really for crying out loud!

Could not resist re-running this Ben photo.

Ellie’s salt suddenly dropped down to 125 last night (135-145 normal range).  Thom said they were playing a game called, “How low can the salt go?”  Now she is back up to 147.  Calcium and potassium have started going up for her, but we don’t want it to go up too high because that can cause a whole other set of problems (muscle twitching, heart problems, constipation).   She is still extremely tired, barely able to keep her eyes open and complaining of headaches.  I suppose her body is working pretty hard right now to regulate things.  Dr. Iskandar (neurosurgeon) wanted to try to get her up and around and in her pjs as soon as possible.  Sort of reminded me of that scene in Dirty Rotten Scoundrels where one of the guys is yelling at Steve Martin in a wheel chair, to just get up and walk!  Come on, you can do it, just walk!!  Particularly when Ellie can’t even keep her eyes open right now.

Adorable Juna and her mom at our dinosaur party.

A great big thanks to Lindsey and Gerald and Juna for watching Ben a couple of nights this week so he didn’t have to traverse back and forth to the hospital.  Ben loves Juna, their daughter so much that he is hoping our baby will look just like her.  While I agree that would be highly enjoyable because that little Juna is just adorable, I tell Ben that it is more likely that our baby will look like Ellie and/or himself.  A big thanks to Jana for the hot dish, we are super excited to try it, our very first official upper midwest dish!  We’ve heard rumors of hot dishes but never experienced one ourselves.  Oh and I forgot to thank Cynthia for the visit this week with Ellie and the yummy bagels.  You still rock (I wrote a blog about how she rocks previously.)  And thanks to Brittany for letting me talk about  fluffy pancakes (my favorites) vs. crepe like pancakes (Thom’s favorites)  for about 5 minutes and authentically being interested in the topic.  How many friends will do that for you?

Today I was in the family kitchen heating up my lunch.  I noticed the bright pink labels used to label food hanging on the refrigerator door had been written on.  When you leave something in the fridge, you are supposed to put your name and date on a label and stick it on your food.  Well someone had written in all caps “DO NOT EAT MY YOGURT IT IS MARKED AS MINE AND SHOULD NOT BE EATEN BY ANYONE BUT ME.”  Or something to that effect.  What I loved about the sign was how raw and real it was, knowing how, particularly at the hospital where you can feel oh so crazy about oh so many things.  And then I thought of how typically when you have a crazy moment, you can walk away and leave it behind.  BUT if you hang a sign on the fridge for all to see, you are going to re-witness your crazy moment every single time you are in the kitchen. 

This afternoon, physical therapy and occupational therapy stopped by to help Ellie move around a bit and gain some of her strength back.  They asked what we would like them to work on while Ellie is in the hospital.  We had Ellie sitting on the sofa for about 3 hours this afternoon because apparently if you stay laying down too long you can develop pnemonia (who knew?)  Before that, a wound care specialist stopped by to check and see how Ellie’s wounds from surgery were healing (from the clamp that holds her head steady during surgery.) 

Ben spent the morning at Tyler’s Place (sibling care at the hospital).  When I picked Ben up, Jennifer the child life worker, told me how impressed she was with Ben, his creativity, his attention span, and his ability to help clean up.  Again, I have to reiterate that anyone who praises my children I am pretty much in love with.  Then today was the day for his playdate with Izzy.  The day he has been anticipating all week long.  He had so much fun going to Bounce U (a play place with all those big blow up thingys) and then for ice cream.  When he got home Thom thought maybe Izzy & Leslie had given Ben coffee because he was so so super excited about his day that he could not sit still.  Thom was going to try the magic of videos to restore calm to his (I think more Thom than Ben) world. 

So this afternoon, I just had this moment, where it felt totally peaceful as if everything were taken care of.  No worries.  Knowing that anything that needed to be addressed will be addressed even with Ellie.  It was wonderful and expansive and I wanted to live there for awhile.

The MRI from yesterday looked good, no changes.  And her heart rate has been between the 70s and 80s (80-120 is normal).  Because Ellie was running a slight fever, Dr. Iskandar was concerned that perhaps Ellie was fighting an infection.  All of her tests checking for that have come back negative, however.   She is not running a fever now.  Apparently running a fever can be a reaction to changes in the brain.  And all of the sudden water dropping (diabetes insipidus) can also be a reaction to blood clots forming and being reabsorbed.   One of the endocriniolgists (Dr. Reim) said that it is a bit unusual for someone to have both cerebral salt wasting (dropping salt) and diabetes insipidus at the same time.  Typically when someone has diabetes insipidus, their salt goes way up as the water in their body goes down.  For Ellie, however, when her water goes down, her salt also goes down.  Fortunately, we are keeping a close eye on it and both are pretty easy to treat.  Although because she keeps changing what she is doing (dropping more water) it is a bit challenging to keep track of right now.  She is not quite back to herself as far as being jilled, just mostly lying in bed staring or sleeping.  That’s the latest. 

Have I mentioned what a superb endocrine team we have?  I think I mentioned how one of the endocrinologists (Dr. Reim) said they would be discussing Ellie at their holiday party.  The whole team is just so informed and invested in her, it’s impressive.  Whichever endocrinologist walks into our room, I know that they will already be up to speed.  Very greatful to have them on our team.

Just a plain old update blog on Ellie, nothing too fancy or entertaining (maybe next time)…

Ellie ran a slight fever yesterday and today and there was a bit of concern that maybe she had an infection.  There was talk of tapping her shunt to make sure it was still functioning last night (that means trying to draw fluids from it from the outside of the head to see if it is still operating).  Today she is super sleepy, unable to stay awake for crayon peeling or a conversation.  We are getting ready to do an MRI, because what the hay, we’re here.  In other related news, calcium and potassium are still low, but sodium is back in the normal range (yeah!)  Her heart rate continues to be in the 60s-70s range.  She is not dropping as much fluids as she was yesterday.  Well send another update when we are done w/ MRI and have any word of the results.  Oh, also, just fyi, for those interested (amy) I put a less confusing definition of diabetes insipidus from another website on my previous blog.

So my great, lovely and curious friend, Amy wondered what”dropping water” meant.  The technical term is diabetes insipidus.  The website www.diabetesinsipidus.org (who knew there was an entire website for it?) has this to say, ” *Diabetes Insipidus (DI) is a disorder in which there is an abnormal increase in urine output, fluid intake and often thirst….

*Diabetes Insipidus is not the same as diabetes mellitus (“sugar” diabetes).   Diabetes Insipidus resembles diabetes mellitus because the symptoms of both diseases are increased urination and thirst.  However, in every other respect, including the causes and treatment of the disorders, the diseases are completely unrelated.   Sometimes diabetes insipidus is referred to as “water” diabetes to distinguish it from the more common diabetes mellitus or “sugar” diabetes.

*Diabetes Insipidus is divided into four types, each of which has a different cause and must be treated differently.  The most common type of DI is caused by a lack of vasopressin, a hormone that normally acts upon the kidney to reduce urine output by increasing the concentration of the urine.  This type of DI is usually due to the destruction of the back or “posterior” part of the pituitary gland where vasopressin is normally produced.  Hence, it is commonly called pituitary DI. “  As some of you may recall, after Ellie’s resection in April 2008, her hypothalamus was no longer communicating with her pituitary glad, which is probably why her body is not producing vasopressin.  Fortunately for us, Ellie has no thirst so we can completely control (like a mad scientist) her fluid intake which in turn can help us more easily control her water/salt balance (or imbalance for that matter). Hope this clear things up, it certainly enlightened me on the subject!

On a related note, Ellie’s sodium suddenly shot up to 156 (normal is between 135-145). When the nurse turned off the sodium/water (saline) mixture we had been giving her, her heart rate suddenly shot up from 70 to 135.  It was one exciting moment as her monitor started beeping that her heart rate was too high.  The nurse explained that Ellie’s potassium and calcium are both low right now so that may cause all of the heart rate craziness (not a technical term).    And if you have theories of your own, feel free to share.

So Ellie has been dropping more water today.  Each hour she has dropped a little bit more.  It’s perplexing to the doctors.  The resident on the floor (who is apparently new) seemed reluctant to call Endocrine.  I told him, “Oh yeah, call ‘em, they talk about Ellie at their holiday parties.”  No move yet.  And Ellie’s heart rate has started inching up into the 80s occasionally (like when I gave her the box of crayons Grandma sent.)  That’s the update here at 4:30 pm.

After the MRI yesterday, Dr. Iskandar (neurosurgeon extraordinaire)  told Thom that he wished he had gotten more out, again.  But we are not going back in for a 3rd shot.  Dr. Iskandar did say that he thought Ellie was doing amazingly well after all she has been through in the last week.   According to Thom, Ellie was asking to peel crayons this morning at 4am, so kinda “back to baseline but with turban”. 

We are doing an EKG right now because Ellie’s heart rate continues to be low, although not as low as it was a few days ago (she is now in the 70s vs. being in the 50s a few days ago normal is between 80-120).  I suspect they are checking it because her blood pressure was a bit high yesterday after surgery.  After her MRI on Monday, the nurse told me that if Ellie were in the ER she would be considered to be in cardiac arrest by her heart rate alone.  But because she was in the hospital and doing fine, it was not considered a problem.  Might have been better for me to actually not know that and here I am telling you, how inconsiderate is that?  Just trying to keep the drama alive here. 

Also, word on the street is that we may be moved to another room, as soon as one becomes available, hopefully today.  This little experiment has shown that perhaps 2 brain surgery patients in the same room is not the best plan.  Because we need this room to be super quiet, Ben has been going to Tyler’s place a couple of hours a day.  It is a playroom for siblings of patients.  Ben loves it there and when Thom went to pick him up yesterday, Ben asked him to come back in half an hour because he had just started a new project.  Ellie’s classmate, incredible Izzy, asked Ben over for a playdate and everyday Ben asks me if it is the day to see Izzy.

A huge thanks to Janna, Thom’s friend/co-worker who set up meals for us.  And the amazing thing is the meals that she has arranged have been perfectly coordinated on the nights when we do not have a meal served at the hospital (there are free family meals served approximately every other day) .  On Monday night (was it Monday?  I’m on hospital time so a bit discombobulated), someone dropped off veggie chili, homemade zucchini bread, ice cream and hot fudge.  Total delicious feast and so nice to come home to, rather than trying to figure out dinner from the hospital.  Then, my aunt Suzanne sent us some yummy English muffins made in Kansas City.  And THEN Ellie’s occupational therapist at school sent us a Panera Bread Company gift card because Panera is close to the hospital.  I say all this not only to say, “Wow!  Thanks!!”  But to let everyone know that we are being well fed.   The very first time Ellie was in the hospital that was one of my sister’s greatest concerns, that I was not gettin enough to eat.