May 12, 2010 - Back to Seattle Children's Hospital

Sigh... well we are back at Seattle Children's Hospital.  We came up this evening, got here about 7:00 pm.  We are back because Ali has not shown the progress since returning home that we had hoped to see.  Her blood pressure is still not down to normal, she is not eating much at all still, and definitely not sleeping very much.  At her appointment on Monday with her pediatrician she had lost another 0.5 pounds since we had returned home last Thursday.  She has shown some improvement but not near what anyone expected.  After speaking with Children's Hospital about her progress they wanted to see her again to find out why she is not well.
The plan here this time is to be here until they find answers.  Tomorrow starts off with an MRI and neurology getting involved, then based on what the results of that show (or don't show) we will move on to some other testing.  The gastrointestinal group may then get involved to find out why she has seemingly had stomach pain for so long that comes and goes.
We have our own room this time around and it will remain that way :) It already seems more comfortable.  We also have the same Dr (Matthew Sullivan) looking after her and organizing everyone else to come in and have a look until we find something.  We like him and are comfortable with him so it is nice to have him on board because he has seen Allison since we came here to the ER back on April 26th and has seen much of her symptoms and progression.
It's a much different feeling this time around.  Since Ali has shown some improvement I am wondering if we just need more time - and maybe not subject her to these additional tests.  Although her frequent mood swings, lack of eating (for about a month now) and lack of any significant sleep at night has us wanting (needing) some answers and direction for improvement.  If we had some answers it would be much easier - I think, but not knowing anything except that she is miserable a large portion of the day is very exhausting.  Over the last few days she has slept a little better at night.  It doesn't seem like she is in as much pain as she has been in the past - but enough to be uncomfortable and awake - way more than she should be.  We are hoping things are lined up here and we find something out A LOT sooner than the 11 days we were here last....
Thankfully my mom is still here and is at home with Sydney.  It has been great having her at the house, even if it's just for the little bit she can entertain Ali throughout the day so Meg can have a few minute break while I am off at work, or making dinner or whatever.  Every little bit has helped a lot.
Well tomorrow will bring some new information and hopefully closer to finding what is going on...