We are home for real this time.

Yesterday afternoon, we made it home from our hospital stay.  Ellie's leaning to the left remains a mystery.  We felt like we had done everything hospitally possible to figure it out, so it was time to take her home and see if she is able to get some of her strength back there.  At home she is much more motivated to move around which if the leany left is due to weakness would be naturally corrected there.  Then we were shocked to learn from a neurologist that sleeping alot after 2 brain surgeries and 10-12 rounds of chemo is not that uncommon.  I mean after every other brain surgery, Ellie has been awake awake awake, sometimes for days. 

We had a home health nurse come to draw Ellie's blood today to check her sodium.   Unfortunately, it is on the rise (156, up from 152 yesterday, normal range 135-145).  Getting her blood draw at home was pretty stressful for Ellie as she was in the middle of doing burk (book +work) when the nurse arrived.  Typically at the hospital, the phlebotomist (person who draws blood) does it quick.  Because for Ellie, it is the anticipation that is so  much worse than the actual poke.  She does amazingly well with the poke.  Anyway, with the home health nurse's questions and checking it took 25 minutes of torture for Ellie and me before the nurse was ready to even attempt the poke.  Then she couldn't get any blood to come out because Ellie is dehydrated (high sodium = dehydration).   So she had to try twice.  At one point she started telling us about a 4-year-old who had a blood draw this morning.  I am not totally sure, but it seemed as if the point of the story was to say that, "Wouldn't it be so much worse if you were 4 having a blood draw than 10 having a blood draw?"  Similarly, after Ellie's second brain surgery in a week, I mentioned that she had had a tough week, because it just seemed like everyone was being so dang loud.  Anyway, the nurse said something about how she had seen some patients who had had 15 surgeries.  I am pretty sure that I could have easily topped these stories.  I mean we had one hospital stay where Ellie was getting a blood draw every hour.  And we started all this business when she was 20 months.  And I am somewhat certain that Ellie has had 15 surgeries, although Thom is the one who keeps a running surgery total.  What makes me madder than a wet hen (and are wet hens really mad?) is the whole thing that telling me someone else's tale of woe will make whatever challenge we are currently facing better.  It just doesn't.   Just makes me grumpy.  And wonder what assumptions this person is making about me and my family's experiences.  And then when I think of Ellie.  How she lays up in that hospital bed and tells everyone how "jilled" (joy + filled) she is and does everything in her power to spread her joy even when she herself is not feeling all the great, I just think she does not need to be guilted into acted the way somebody else wants her to.  And if we are having a moment of challenge, then I wish that we could just have our moment without comparisons to anyone else's experiences.  Plus who wants to be portrayed as the family that has it so bad anyway?  The one that all others can use as a yardstick that their lives are better.  Ugh.  I mean we ALL have challenges to face, right?  I guess it is all an excellent reminder of the power of truly listening.   The times when I have felt completely heard by whomever was around me have been transformative.  Powerful beyond words.  Allowing ME to, at times, come to the conclusion that maybe just maybe things are not as bad as they seem and that there are many parts of my life for which I am greatful and would not change.