May 6, 2010 - 10:45 am

Day 11
Going home today?  We hope.  We met with the doctors this morning and it looks like we may be going home today.  Ali did have a rough night last night, was not comfortable and did not sleep.  We did start feeding her at night - which meant a higher feed rate which may have contributed to her tummy aching a little.  We will speak with the nutritionist - Jennifer -  more today (she did stop by this morning) and get our official training on the feed pump (at 2:00pm) then hopefully everyone will be in agreement and we can get out of here and see how she does at home.  Matt (Mathew Sullivan - her primary dr.) spoke with us for a bit this morning and was apologetic and let us know he was frustrated and disappointed he could not give us some more concrete answers.  He wanted to keep in touch and definately if she seemed to remain uncomfortable and doesn't seem to be bouncing back now that her blood pressure seems to be under control to follow up and not let it go too long.  We will monitor her blood pressures and the amount she eats (when she starts eating) to report back here to the hospital and they will work with us on changing feed rates and medications if necessary.  It kinda feels like we are back where we started as she seems to be uncomfortable again, but they have gone over about everything here and her blood pressure is much more under control.  Hopefully getting out of here and getting home she will be more comfortable and feel better.  Ali finally wants to go home (for a while she said she wanted to stay here...) Most everyone here has been great, disappointing we still don't have concrete answers as to what was going on, but she does seem to be better and hopefully will keep going that direction.