Sunny Days with Debi

For the rest of our hospital stay we had the most stellar nurses.  The ones who were kind and interested in what Ellie had to say, responding to the call button right away, truly on top of their game.  Thom thinks that maybe we have some kind of special mark in our file indicating that we need only the best nurses or we will complain.  Sounds good to me. 

After almost a full week, Ellie is officially cleaned out (and still doing so).  Ellie was sent home this afternoon after making sure that she was able to keep her meds down when given through her g-tube (the tube that goes into her stomach) because she had been receiving her meds through IV.  It was amazing to watch Ellie go from being upset and asking the whole time to go home on previous hospital stays to being at the point of feeling “jilled” (joy + filled) while in the hospital.  (Her nurse’s name yesterday was “Jill” so you can imagine how much entertainment value that had.)  It was as if Ellie suddenly realized there was an entire community in the hospital that knew nothing about her words, worlds, gardens.  A captive audience.  This morning the young resident on our floor (he looked just slightly older than Ben to me but maybe that says more about my age than his) asked Ellie if she wanted the doctors to do rounds in her room (rounds are where the residents, medical students discuss a patient, treatment plans, etc.).  Ellie eagerly agreed.   Thom said when the group arrived Ellie immediately started into her routine, barely giving the resident a chance to say what he was there to say.  I wonder if he’ll think twice before asking that question again.

So as a recap for all you who have NOT been following along (shame on you), here is a quick recap.  We have been in the hospital since last Saturday basically to get Ellie cleaned out so she can eat again.  Yes, you got that right for poop (or bowel movements as they say around here). 

Yesterday was a big day of clearing out for Ellie.  At one point we were running back and forth to the bathroom every 5 minutes.  I was wiping Ellie as she did a down dog for me (hands on the floor bum in the air) and literally clear liquid stuff starting spraying outta her bum.  She looked like an upside down fountain.  I have never seen anything like and hope to never see anything like it again.  I panicked and tried to get her back on the toilet.  With poor Ellie apologizing the whole time.

Ellie keeps saying, “Aren’t you glad that pooping is so much easier for me now?”  Which makes me smile because I am thinking boy I sure hope so after 6 days of working on this!! 

Ellie is in great spirits and is thoroughly enjoying explaining all of her words and ideas to a whole new audience every 12 hours when the shift changes.  The nurse just came in to explain our new “stool management”.  How fancy does that sound?  Go ahead send me your best poop jokes in the comments…

Yesterday we originally started out with a fabulous nurse.  Things were flowing heavily for Ellie so we were in and out of the bathroom, sometimes making big messes along the way.  Every time our nurse would come in she would jump in doing everything in her power to help–cleaning up the floor, cleaning Ellie, changing bedding.  It felt like we were a team because I wouldn’t even have to say anything she would just come in and start doing whatever needed to be done. 

The next shift nurse gave us a lot of contrast to that experience.  After Ellie goes to the bathroom, the nurse needs to “check” it to see what it is looking like, how much is there, etc.  After Ellie went numerous times in a row, we had a humongous mess in the bathroom.  Literally a puddle of unmentionable stinky stuff on the floor.   I mean I was busy with all the action in our room.  I called and no one came.  I rushed out to get a new bed mat for Ellie because the old one was soiled.  I noticed our nurse was sitting at the desk across from our room talking and laughing with 5 or 6 other nurses.  Now I am all for having fun, I in no way want to impede upon that.  But seriously, I had been waiting for her to come to our room for 30-45 minutes while Ellie ran to the bathroom every 5 of those minutes.  It was a mess.  Finally everything seemed to be somewhat under control.  Last night, Olive Garden brought a free dinner to the kitchen on the floor below us.  I opened our door and asked the group of nurses sitting across from our room if they could keep an eye on Ellie while I ran to get some food (if you know me then you know that HUNGRY is NOT a good look for me.)  I specifically said that she might forget where I had wandered off so if they could let her know I would be right back.  You know how when you are in a hurry it seems like everything but everything takes forever?  The elevator, waiting in line, I was rushing rushing rushing.  When I returned to the room, Ellie was sitting on her bed and she immediately said, “I’m sorry I kept asking for you.”  And she was sitting in a dirty pull up.  I was livid.  At that point the nurse did come in to help out so that I could grab a few bites as Ellie needed to go to the bathroom yet again. 

I decided that I needed to share this information with someone at the hospital in the hopes that perhaps this will not happen to another child.  AND selfishly in the hopes of NOT getting assigned that particular nurse again.  I asked our nurse today if I could speak with the manager/supervisor and she was not sure who she should direct me to.  When I explained the situation from yesterday, she too became furious.   For the rest of the day she has been so totally helpful, asking me to let her know every time Ellie goes to the bathroom, actually giving Ellie a bath.  She even went down to the cafeteria when Ellie finally proclaimed that she was hungry to get Ellie’s food so we wouldn’t have to wait 45 minutes for it because at that point Ellie was obsessed with eating.  (And we were all pretty happy she was actually asking for food and wanting to walk around the hospital unit!)

I was upset and disappointed when I left yesterday but really the nurse yesterday gave me such an opportunity.  To practice expressing myself rather than always trying to “be nice”.  To  appreciate the phenomenal nurses that we have had both today and yesterday.  Without the contrast of the nurse that we had yesterday I am not sure that I would have appreciated the spectacular nurses we have had as much.  Maybe I would have but maybe not.

So on Saturday morning Ellie started throwing up.  Just that continual not feeling well and throwing up over and over.  That just makes me mad after awhile because it seems to me only fair that if you actually throw up you should by all means be rewarded by some relief.  For crying out loud.  I mean really. 

We called one of the endocrinologists (Dr. Reim) and she suggested we go to the ER.  She was concerned that Ellie’s shunts were no longer functioning (an “occlusion” if you must know the medical term).  Several weeks ago we started giving Ellie supplemental feedings when she pretty much stopped eating outside of an occasional chocolate chip cookie.  After starting the supplementation, her sodium began to rise.  So Dr. Reim was also concerned that Ellie’s sodium might be at a dangerous level since it was high before the onslaught of throwing up (high sodium = dehydration).  We fully expected to get things checked out and then go home to adjust the amount of water we are giving her.  We did not feel it necessary to inform anyone of our plans for the day as we figured everything would be sorted out quickly.  Going to the ER hardly seems an event.  Even a hospital stay overnight hardly seems phone worthy at this point. 

If you read my blog about our last ER experience (and if you haven’t you should it is highly entertaining, ok I won’t tell you what to do but you might get a small chuckle out of it…) then you know that we left there feeling as if we had made up the whole brain tumor thing and maybe just maybe she had a urinary tract infection.  When I talked with Dr. Reim, I asked her if she could help us get set up in the ER and she agreed.  When Thom arrived the nurse immediately asked him what he wanted to see happen (now see, that is what I am talking about!)  An MRI was ordered along with blood work.  Her MRI looked really good, even better than the last time we checked.  AND her sodium had actually dropped rather than risen after throwing up all morning (isn’t that just like our Ellie to do the opposite of what we would predict?) 

Ellie was checked into the hospital for the night because she had some unexplained tremors and jerking (not uncommon for someone with fluctuating sodium and tumor embedded in the basil ganglia).  An x-ray was done of her abdomen and it was discovered that she was just full up of waste material (aka “poop”).  The theory is that she was so full that she could not process any more and so began throwing up. 

Now we have been working for 2 days to get her cleared and nothing is moving.  And I have discovered over many years of fighting with poop that it will not come out if you yell, “YOU HAVE TO POOP RIGHT NOW!!!”  Same idea goes for pee too if you must know (tried that one out yesterday actually).  You gotta relax and let it flow.  Basically we can’t put anything else IN until something comes OUT.

Today at noonish.  More details later, gotta run, Ben in bath…

This morning they must have given Ellie some giggle juice because I am telling you, everything I say is absolutely hilarious to her.  Unfortunately when she laughs it hurts her incision site, so it is sort of a laugh/grimace kind of action.  Then I tell her, “Don’t laugh!”  Which only makes her laugh all the more.  For example, her monitor started beeping and said, “skipped a beat” and I commented how this sounded like a Janet Jackson song, “You skipped a beat…” of course with the appropriate Janet type of moves.  And she could not stop laughing.  Then I told Ellie that my nose keeps running and it is driving me crazy.  She could not stop laughing envisioning my nose running off of my face.  At this point, I guess I don’t need jokes to make her laugh, just more giggle juice. 

So recovery yesterday took a lot longer, which was why I had not heard back from Thom.  I mean it took hours.  Here is the report I received from Thom about those hours upon hours in recovery.  “She took longer in recovery than expected.”  Is it something about having that Y chromosome that makes all the details seep out of his body before he can report them to me?  I am quite certain that I would have had at the very least a 20 minute monologue about all of the events.   Or at the very least a blog.  God bless him, he can’t help it.  I guess it just gives me more time to talk.

Right now Ellie is having another MRI (one that was originally scheduled for 8:30 am this morning, but you know we are on hospital time here).  When I questioned Thom as to why she is having another MRI when she didn’t after previous shunt revisions, Thom told me he had no idea.  I am guessing they want a more detailed picture of what is going on than the numerous quick brain MRIs we have completed as of late.  Ellie will be really really happy when she awakens because she will be able to eat again, something she was very much wanting to do before the MRI.   

Overall Ellie is doing much better than when I last saw her, she is able to hold a conversation (until she becomes too tired).  A student volunteer was reading to Ellie earlier today and was having trouble saying one of Ellie’s words.  Ellie very quietly and sincerely told her, “Don’t worry, you will never be in trouble with me.”  Oh man was it so sweet, so typical Ellie.

We had such a blizzard today that the entire state of Wisconsin shut down.  I mean I would expect something like that from a state like Tennessee, but when Wisconsin shuts down, you know it is one ferocious storm!!  So today while Ellie is in surgery, Ben & I were hunkered down at home.  Ben is not feeling very well today, probably partially exhaustion from the crazy hours we have been keeping this week and a wee bit of a cough.  He was asking me to lay in bed and read with him several times throughout the day and now at 4:51pm, he is already asleep. 

I realized that shoveling was going to be quite a feat for me with Ben feeling under the weather.  Typically we just take him out with us and he “helps” shovel or builds something or throws snowballs.  I called my neighbor, Chris, to see if she could turn me on to a neighbor kid who would do it for me, at this point I was willing to pay the big bucks to have it done, as it did not look as if anyone could actually get to our door anymore.  When I explained what was happening today with Ellie my neighbor and her partner, Kathy came over and snowblowed (is that what you say?) our driveway and front sidewalk PLUS shoveled out our car.   Not only that but when the snow started pile up again later on in the day, Chris came back for additional shoveling.  What a load off my mind!  Thank you so much Chris & Kathy for your assistance today, I don’t even know how to begin to thank you!   

I still haven’t heard an update from Thom yet.  That is what makes being at home harder, not having the minute-to-minute updates and actually being able to see how she is doing with my own eyes (I am afterall, from the “show me state”).  Maybe he’ll comment on this blog and then I’ll know….