So glad it is the beginning of a new week.  Last week is one I would like to wipe from the calendar!  Megan is on bactrim again for a bacterial infection.  Second one in a month.  Tuesday night she was up all night crying and flailing around.  So Wednesday I spent the morning in the Dr. office - on about an hour of sleep.  Then I got to clean up and go to a meeting at James school which I dont think I was alert enough to convey what I needed to.  Then off to drop James at PT - while he was there I went to CVS to replenish Megan's supplies - picked him up and walked in the door at 5:30.  By 8:30 I was almost in a coma I was so tired.  Thursday morning we were supposed to be at All Childrens for an ABR that we waited 2 months for the appt and had to cancel it.   Of course next available is now in November.  Thursday afternoon was a mess of appointments for James.  I was trying to work on stuff in waiting rooms to catch up on everything I am behind on.  Proved not to work out so well!  So now I am frustrated because I cant seem to accomplish anything completely and I come home and try to work on things.  I open a package containing Megan's most recent MRI report and a disc of images.  You know I had to see if I could look at the images.  Usually I can't because it requires medical software to open and read but this one opened to my surprise.  I have seen the images before so this one was really upsetting to see.  It showed severe atrophy - especially the left side. the left side looks so little and like there is so much space in there.   It is not that I don't know that her white matter is vanishing but I guess you hope maybe it slowed down or stopped happening.   How do you stop a progressive disease?  If I knew the answer to that question.  Talk about helpless.  Of course I am totally sad now but can't show it - still have kids, dinner, Pat, Megan....
I get quiet and just go through the motions.  When the nurse got here at 10pm  I could not wait to go to bed and just sleep so I could stop thinking about it.   
On Friday morning I feel better - still a little far away though.  Definitely ready to accomplish all the things I need to.  Had to start out right away trying to solve nursing dilemnas.  I have two nights that need to be staffed. Each of the night nurses want off of one of the nights they do.  So I start on that and am thinking we will figure it out to accomodate everyone.  I will make it work even if I have to hire someone myself to alleviate the nurses from a night a piece.  Then the rug gets pulled out from under me - the nurse who is with us the longest and is who I feel closest to our entire family and we are very grateful to have tells the agency that it is not just one nite she can't do - she quits completely - with no notice.  I can't help wondering why?  What did I do?   I am baffled and can not understand.  If it wasn't us then why no notice?  You only do that when you are angry or something.  Otherwise you give notice, right?  Ryan asked me why she quit.  I said I dont know.  She did not tell me.  She told the agency.  He said why didn't she tell you?  I thought she was friends with us.  Although there is not any obligation and the proper procedure is to tell the agency there is a bit of personal dynamics that come into the whole situation. Lesson learned - dont expect people to act the way I would.  They are not me and my expectations are unrealistic.   My feelings are really hurt but I have to put it into perspective.  It is a job and a business arrangement.  The job is to care for Megan.  Plain and simple. I will make sure to keep it that way from here forward. I have to move past it and figure something out.  There is no time for setbacks and stumbling around when it comes to Megan.  It affects everyones quality of life in this house as well as our mental health and ability to be productive from day to day.  As I am gaining more experience in this area of my life I am starting to realize that some of the stories I have heard about these awful parents are half truths because the parents get burned out on this kind of crap and have to draw lines or put up a wall to keep it business - no friendships or weakness because then it gets complicated and it cant be. Easier said than done.
To get a good fit - now that is the focus.  Megan is sensitive and too many caregivers is upsetting to her - and me.  Too many cooks in the kitchen kind of thing.  Just having someone in your home is strange.  You get used to it because it is necessary to sleep but it is NEVER normal.  It took a long time for the boys to get used to it.  They know that it is necessary too for all of us.   They remember when we had no help.  It has only been 13 months that we have consistent nursing.  The year prior to that I got my mercy 12 hours per week so I could sleep one night a week.  When Megan was on the ventilator I did not even have that so I am grateful to have the help.  Very grateful to have the help.  The cons too it are the people in your house and juggling the various personalities and any issues they may have.  Whether the issues are with the nursing agency, notes, their own lives.  We have issues too. The same as everyone else  - and we have the weight of worrying all the time about Megan and dealing with the fallout it has on James and Ryan and us too.  Having the nursing shifts provides for us to be able to work and sleep and things every family does - groceries, bills, sports, school, blah blah blah.  It is not a luxury and something I would not need if she was not sick.  Nothing would make me happier than to not NEED this.  That would mean Megan would be better!!!!!

Anyway - Friday sucked.  There was a BBQ cookout at James' high school Friday night before the football game.  Big family event.  Pat went up with James.  They worked the parking lot for the game and James' wrestling team painted themselves up and raised money for their team.  I was supposed to go with Ryan and Megan but that did not happen.  Megan needed nebulizers and respiratory cpt care and was having lots of seizures so she was not up for it. So we stayed home - I took care of Megan while Ryan sat on the couch alone watching TV.  Night nurse was scheduled for 9pm.  At 9:30 still noone here so I called and got the - oh - didnt anyone call you?  She can't come tonight.  When Pat got home with James around 10 I think I looked glazed - just like wth?  Friday night sucked too.

Now you know why I hated last week?  Meg is crying - have to go.......