We played "Princess" part of the day,
those were happy times

 I'm just gonna get right to it.  Today stunk.  I wish it was different but here it is.  I had to start a load of wash early this morning.  When I went to switch it I found a baby blanket that does not belong to me and was not there when I started.  We know how wiggy I can be about germs so I was pissed.  The weekend docs rounded and did nothing.  Oh, they are the ones who told me some of Meaghan's cultures came back and it is definitely pseudomonas.  The MAI and fungus results we still have to wait for.  When I told them about the raised itchy rash Meaghan has under her PICC dressing they didn't even look.  Then I found out that Meaghan will be coming home with TWO IV antibiotics to last through November 21st!  She has a clinic appointment that day to remove the PICC.  They couldn't tell me if/when she'll be swabbed again to check to see if our aggressive stance on things worked.  So that means Meaghan will not be returning to school before Thanksgiving.  That was wishful thinking on my part but it would have been nice.  Maybe by the next week I won't feel rushed to try to put her life back on a well kid schedule.

Throughout the day I just felt lonely.  We had no visit from Daddy today.  There were lots of things going on outside the hospital and it just couldn't happen.  For Meaghan's health and safety we can't have visitors.  There is already a mean flu going around and we can not take chances.  So even though a ton of people out there are offering to visit or support us I can't take anyone up on the offer.  In fact, during our day nurses lunch her replacement charged into our room without the required gloves, gown and mask.  My stunned expression wasn't enough, I had to ask her to leave and take all necessary precautions BEFORE touching my daughter.     



Meaghan's food orders are still being messed up so she is left feeling disappointed when the tray arrives.  Luckily she has discovered Honey Nut Cheerios again and canned peaches.  Honey dipped donuts, plain noodles and potato chips sustained her today.  I have talked to the nutritionist, the nurses, the charge nurse, the girl assigned to families on our floor and even the people in charge of the food service.  Everyone wants to help but the situation has not improved at all.  Meaghan's snacks haven't come on a consistent basis or included foods she's even going to eat.  When I place her meal orders things I order aren't there or they are plain wrong.  I don't see the benefit to doing meals this way, we have been responsible for so much waste this stay.


Now, you are seeing these unhappy pictures because late this evening Meaghan was too tired to just let nature takes its course.  She was sure it was going to hurt.  It hasn't yet so I have no idea why now she decided this.  I fought her alone for 5 minutes or so and then Meaghan wanted her nurse.  Her nurse was so not interested in helping.  She asked me two or three times what I wanted her to do.  I wanted her to talk to Meaghan and get her to try to sit on the potty.  So  I had to just excuse her from needing to do anything for us, she was clearly not going to make the difference. I spent better than an hour with Meaghan. These are just a few of the pictures I took of the tantrum she was having.  One day she will surely HATE me for it but tonight I need this.  In the end, the business was done and no one was hurt.  She was so shocked, Mommy was right.  Oh, my future!

It was this little therapy technique that finally got her to relax and sit long enough to get it done.  What's crazy is, oh never mind, the whole thing is crazy.  It was 10pm before she got into bed tonight.  While we were getting into bed our neighbor was having a heated discussion on the phone.  I hoped Meaghan was ignoring it but then she asked me,"Why is that lady mad?"  Once "that lady" chose to use some of the most colorful words Meaghan has ever heard I got the nurse right away.  First, I was worried about Meaghan.  Later I realized, SHE'S A MOTHER!  In her daughter's room!  Language like that is uncalled for and completely unacceptable given our surroundings.  Thankfully our nurse was more inclined to do something this time.  She just got another nurse to go talk to the woman but at least it was done.  The discussion continued but at a more tolerable level.  Meaghan never repeated any four letter words or asked me what they mean so I am hoping that one is behind us.

I think that covers things for today.  It's almost midnight and I want to fake sleeping by the time the nurse comes in to do vitals in a few minutes.  Thanks again to all, love and hugs too.