CHB X 4

We were not successful with a longer treatment yesterday....So here we are again in Boston today.  We will have 4 trips in to CHB this week.  Close monitoring over the next couple of days, will determine if we will permanently be on a 4 day schedule.  I'm feeling pretty burnt out!  There is a chance that we will only be here for a couple hours and not a full treatment!!  That is what is keeping me going right now.  Also Mark's main nurse is here today.  She oversees Mark's full care plan.  It is nice to chat with her about Mark and life.  She is here a lot of the time that we are, but occasionally she has her days off!
 Mark seems to be having pretty good treatments lately.  Yesterday we had to stop due to the longer treatment being more intense.  His blood pressure was really low towards the end.  We called it quits and came back today.  Overall he really is a different kid at dialysis now.  He is what the nurses were hoping he would be.
We had his full lab panel done today for his Infectious Disease appointment.  This means we will meet with them very soon.  That is just a small piece of the puzzle to be cleared for transplant...but we are moving forward.
The days have just been so long lately.  Mark is such a busy boy.  At the end of the day I am so tired, but still not sleeping well.  I'm up soooo late.  I want to get myself into a better night time routine.  The question is how will I do that?  If I go to bed early I wake up in the middle of the night and can't sleep.  There is too much on my mind.  I'm just sick of being tired!!!  I say I will work on it...but I won't! There are other things that are more important to me at the end of the day.  Once Mark goes to bed it's my alone time.  I need that time of day.  Why would I waste it on sleep?

P.S.  I finally got my hair colored.....Grey Free!!!  I went this morning before we came to Boston.  Thanks to my Mom coming over and a being squeezed in at InStyle!