April 15, 2013

Monday
Unit 1
Weight 13.4 kg
Nurses Bekie, Becky and Amy

Today was a tough day for you. Mom went home and you have another scheduled LP, so you were fasting, its a very emotional morning for you not to be eating.  Mom stopped by before heading home to open birthday cards with me and to give you one last hug and kiss. I can't imagine how it must feel to have to head back to Medicine Hat.  I know she is excited to see your sisters, but to leave you here must be hard.

You are 2nd in line for the LP, but today for some reason they have us come over and wait in the clinic for 20 minutes first.  I don't think this routine is helping your mood and you have increased anxiety.  You are starting to understand what each different test involves.  While we wait you almost sob and keep saying "no pokes", "no medicine" or "no hurt my tummy".  It breaks my heart. Today's LP is in the procedure room so its not quite as intimidating as the stark white operating rooms. I hope with time and health you begin to feel more at ease.  The LP is quick, I barely get enough time to go back to the room and shower quick, you are awake before I get back. 

Normal routine starts again when we return. You eat half a bag of rice chips, rice cakes, a cookie and popcorn.  Also, once again they forget to bring your lunch, but as always the fabulous nursing staff is quick to get a custum ordered lunch order (your favorite fish sticks).  However, before lunch comes you grow un-settled and go off to sleep, after an hour nap though you wake looking for your fish sticks and devour them quickly.

Now back to the tough day part, you just don't settle all day, your NG seems to be a non stop annoyance, you don't want to pee and its another day of no BM.  Every time we change your lines for meds, draw blood or star fluids you just snap, walling arms, legs and your head tosses everywhere while you scream.  The nurses think its the amount of time you have been on the steroids and the personality changes are happening, just 3 more days and we can start weening you off.

Auntie Chandra, Uncle Brandon, Carter and Mailey brought us supper, birthday cake and came to visit.  For awhile you seemed content, you looked like you wanted to play with Carter and would actually respond to questions pertaining to him or Mailey.  You didn't really want to eat though, you had a meatball, little yogurt then went into the buffet requests and eat just bites of each request.

Tomorrow is a new day, I just hope you have a better day, its so hard to see you down like this but keep reminding myself how tough you must be to keep going.  The support for you and for our whole family has been overwhelming and the list of people that want to help and offer support is non-stop.  You have a lot of people that believe in your courage and strength.

You will always be my Hero,

Dad