up, down, backwards, sideways...FORWARD

the many faces of Mighty Margaret

Today we are composing this update with an overflowing amount of excitement!

Our weekend has been anything but boring.  Margaret had a very rough couple of days (again) and the result was a consult with the pain and palliative care team.  It was decided that the oral medication that had been prescribed in order to replace the IV med was not working well enough.  Apparently most kids can't tell the difference between the two meds but there are some who can...no surprise to us that Margaret can totally tell the difference.  She can also tell the difference between certain PPIs that she's been on for her reflux, but thankfully we figured that one out finally with help from her truly amazing pediatrician and team.  I'm hoping somewhere in Margaret's chart it's written in giant red letters the words:  VERY SENSITIVE TO MED CHANGES!  GLACIAL PACED-WEANING ONLY. 😆

Anyways, back to this weekend.  Yesterday, after consulting with the team, the dosage for the oral medication was increased to more of a moderate level - she was previously on a minimal dose with hopes that it would do the job.  Mom might have had a mini breakdown and finally told the doctors that enough is enough and clearly the current plan was not working.  The new dose seemed to be working MUCH better.  Phew. 

Advocating is hard.  I have a whole new outlook on how the families I work with must feel!

Overnight Margaret was able to get a solid 5 hours of sleep before waking up fussy.  She was able to calm down after a while and actually went back to sleep and woke up around 8:15.  We celebrated by accidentally disconnecting her extension from the feed pump and spilling formula all over me.  Whoops.  We couldn't help but laugh because that's totally something that has happened many times at home and it felt like we finally were able to think about something other than withdrawal.  

finally got some sleep!

our little fam bam

Margaret has been in a great mood and we can tell she's feeling a million times better.  It's absolutely crazy to think that less than 2 weeks ago she had open heart surgery!  It's kind of funny because I used to joke with Bill prior to surgery that this time we would bring her home with the glue still on her incision...guess not this time as the last piece of glue fell off yesterday.  Maybe next time we will be able to skedaddle out of here a little faster.  It's all up to Margaret, that's for sure.  

Overall, we are all feeling refreshed and super excited because discharge orders have been written and now we are just waiting for everything to be done!  We are going to RUN out of this place.  (discharge usually takes a while so we just hope to be home later this afternoon). 

adding more to her Beads of Courage