Liam's home

Again, not because her condition improved so much, but more because Rachel thinks everything they do in the hospital she can do at home.  Liam is under a lot of pain in recent days.  The picture of her laughing that we posted a few days ago is a distant memory now.

I will add to this post tomorrow - hopefully.  Check back right here for an expanded post.  (I should probably do it now.  Liam's staying in the TV room, which means that Rachel is watching Dances With The Stars from bed, which means I'm forced  be awake....spousal abuse at its worst.....A Schmaltz Widow, that's what I am.)

Continue from yesterday....

I know that the first thing you want to know is how was my night after Dancing With The Stars.  Not too bad, I must admit.  Unfortunately, Liam's night was not that great - and consequently Rachel's.  In addition to the pain she's living with, there's the getting used to home again.  She had dialysis yesterday and then moved from the hospital home.  For the rest of us changing rooms or beds is no biggie.  Not so for Liam, especially after such a long time in the hospital.  This is just a theory, of course.  We don't know for sure that  this is bothering her.

We, and the medical staff too, have changed our attitude toward Liam's pain recently.  In the past we wanted to know what's bothering her.  We were after the symptoms.  Today we want her to be first of all pain free.

And talking about today, Tuesday, she just has a very very difficult day.   She's miserable.  Lots and lots of pain.  It's hard to calm her down.  The medication can only go so far.  Her blood pressure is high, which may be a contributor.  You see, when still in the hospital, her blood pressure was too low.  So they stopped the BP control medication.  And now it's too high.

A Name
For the past 2 years and even more so in the past 9 months (since Sept 2009), Liam is suffering from "something".  Nobody was ever able to narrow it down to a known, named illness.  That is still the case.  And the truth is that she really have a variety of issues:  kidneys, high blood pressure, neurological, respiratory issues, orthopedic, motility, chronic vomiting, what am I forgetting?  Each one of these problems is a serious issue for anybody, let alone for a weak, disabled child.  I always claimed the majority of her issues is "central", i.e., coming from the brain.  But what do I know?

With dialysis under way and blood pressure under control (most of the time), focus has been shifted most recently to pain management.  Surprisingly, one of the doctors came across an article that describes a group of symptoms that matches Liam almost perfectly.  This is the first time that we maybe, just maybe, have a name for what she has:


Visceral Hyperanalgesia

We don't know for fact that this is indeed what she has.  Also:
1.  The above article does not offer any specific cause or solutions.
2.  The article discuss kids who have just that issue alone (which is a huge problem for any kid), not somebody like Liam who has multiple issues.

So we might have a name.  This good, since we could never call her stomach-intestines-motility issue by any name.  Is it progress?  Not really.  At least not yet.  If/when the Drs find a case where treatment was successful, than maybe we will have something to look forward to.  At this point, as noted above, it's all about pain management for Liam.