Homeword bound, I wish I wa-a-as

On Wednesday Liam was scheduled to have this test where they give her either food or "something", and follow it down  to see how it gets through her system.  Just before starting, they scanned her intestines and to their surprise they found the stuff they gave her in a test **LAST WEEK** still sitting there.  WOWA!!!  We knew about poor motility already, but we didn't know it was that poor.  The question now, as before, is weather it's a mechanical issues or what is referred to as "central" - the brain, in plain English.  Even more plainly, is there a defect in the digestive system or is the brain not sending the right signals.  The GI experts think it is indeed central, but we are not giving up yet.  There are still more avenues to explore.

So back to the larger picture:
* It's difficult to say or to know if her seizures are under control, but those that we do observe (I thought I saw one tonight) are less severe.
* Her blood pressure is regulated.
* The kidneys are stable.
* She currently infection free in her urinary system, although we know UTI can always return.
* Her breathing is stable.
* That leaves us with the digestion system and feeding.  As mentioned above, there's no feeding now.  Liam is being "fed" with IV feeds - clear liquids (fats, sugar, etc.) straight to her blood vessels. 

Home?
This coming Tuesday is a target day for us to leave the hospital - after 8 straight weeks.  We're taking half the hospital with us:  the IV feeds, other "plumbing", a hospital bed, and even a nurse.  Working with the nurse and a lab and the Drs, we will take blood and other samples for the different tests several times a week.

It should be noted that Liam's coming home not because her condition improved so much, but more because there's nothing that they do in the hospital that we can't do at home.  Not to be pessimistic or anything, but I pointed out yesterday that every time we left the hospital for the same reason, our stay at home lasted only a few days because it deteriorated and we had to return.  This time I'm more optimistic, though.  Why?  Maybe just plain stupidity.

Because football season is over and golf is just starting, we decided that Liam can have my TV.  In other words, we will put the hospital bed not in her room, but in the TV room.  Come April and the Masters, we will have to re-evaluate the situation.....  But, I'm not worried.  Liam is my sports buddy. 

Snow

Meitav (at right) and Giana (neighbor) in the back yard.

 

Because they work 12 hour shifts and because they have to be at work at 7 AM, many nurses, who just finished their long shift, are staying the night at the hospital.  Some can't get back home.  Others are staying because the morning nurses won't be able to get there.