May 31, 2010

Well it's been a while since any updates, because well, there hadn't been any updates.
So lets see if I can recap the last 10 days... Last Thursday and Friday we had appointments up at children's Hospital.  Thursday with gastroenterology, Friday with biochemical (metabolic), and then a bit later with Neurology.  These appointments involved, going over "the story" again (and again) and getting the Doc's familiar with Ali.  Then before leaving stopping by the lab and Ali donating a whole bunch of blood for more tests for everyone...  The plan is for everyone then to get together and come up with some sort of plan early this week - although it may be a little longer before alot of the blood work come back.  Dr. Suskin (GI) didn't seem to think a whole lot was going on that he could help with - although he did mention a possible endoscopy to make sure if things didn't improve.  He was going to come of up some ideas to try and get her to eat.  Sounded like just removing the NG tube he thought may help - the other Dr's seem to agree so maybe that will come out in a few days.  If she didn't start eating enough with just that it sounded like we would try a drug (can't remember the name) that would try to get her appetite going, if that didn't do much we would try a steriod - if still not much then the tube would go back in - monitoring her weight through all this to ensure she isn't losing too much.  We should hear from him tuesday or wednesday.  Biochemical would be looking for a a bunch of things in her blood to see if they could find ANYTHING out of balance.  They also took a complete family history to see if anything there would tie in - but initially no "light bulbs came on".  Neurology was still ok with her in that they didn't see anything that would alarm them... although they did want to some time down the road take another MRI and compare what they saw a few weeks ago with the new one to see if anything had changed.
In the mean time we decided friday night to not hook her up to her feed pump and see what happens... since then she has been eating some... I don't think enough - but A LOT more than before.  We'll check her weight Tuesday and see how she is doing.  She does eat at breakfast, lunch and dinner - varying amounts but she is eating!  She had also been sleeping fairly well (for her) since last Tuesday or Wednesday night.   Waking up throughout the night but able to go back to sleep fairly soon... not up for hours.  Although last night she was up again more than she slept!  And so was dad :(  She does get up and move around the house quite a bit, but seems to get run down and gets whiny and heads to the couch.  I am not quite sure what we are going to do with her medicines after the tube comes out... as she won't take all of them by mouth.. :(  Her blood pressures have been under control in the 1 teens over 70's.  But man she is MOODY -  side affect of the medications?????????  We would very much like to get her off of everything - although her blood pressure needs to come down still to do that...
She is sooo much better than a few weeks ago, but still has a ways to go to get back to the bouncy 3 year old she should be... Baby steps..... Her moodiness is getting to be trying, but we are all still hangin in there.  I hope last night was not the norm again with her sleeping and she starts getting some more rest.  She complains a lot about her back hurting these days.  Not sure why, might just be all the couch time - but it seems to keep her up at night and uncomfortable throughout the day...