sunday scaries

FIRST – I want to say thank you all so much for the amazing feedback on the video I put together.  I SO appreciate all of the kind words and we are just BEAMING with pride for our Beazy noodle.  Didn’t see the video?  Find it at the link below….

https://www.youtube.com/watch?v=xbp3wdp-fGw 

It is Sunday night and I am coming off of an amazingly relaxing weekend (more on that later this week).  Tomorrow is a BIG day for us.  Bea’s central line (see picture below) is a line that is sewn into her chest and goes directly to her heart.  This line is where our nurse draws blood from 2x/week.

They put this line in when she went in for her transplant and she’s had it ever since.  Although this central line prevents Bea from being poked 2x/week, it is a very major deal and something we have to watch like a hawk.  We can’t get it wet so we have to wrap Bea in cling wrap and then an aqua guard every time we give her a “bath”.  I say “bath” because we basically cannot get her mid-section wet so it’s basically a sponge bath.

Since this line goes directly to her heart there is also major concern for infection.  We have to flush the line every day (we = Jordan) and the nurse has to re-dress it once a week.  Everything has to be sterile when she does this and we all suit up in masks and gloves.  It is pretty intense.  

Because it has been on for so long and I am SURE it is itchy under the dressing, Bea tries to take it off herself and has been successful….multiple times.  When she does that and the line is exposed, we either have to call the hospital and they send a nurse or we have to go to the Emergency Room ASAP.

Needless to say, I have been counting down the days until she gets her line taken out (although I LOVE our nurse that comes to the house).  Her line is scheduled to come out next Monday because her blood draws will go down to every other week (so we won’t have to prick her very often).  She will go under for the procedure.

SO – tomorrow we are testing how easy it is to prick Bea.  She still has her central line in but we are taking her in the morning to have blood drawn normally as a trial run for when her line comes out.

Once her line comes out we will have to go to the hospital 1x/week to get blood drawn right before her 9am medicine.  This blood draw tests her liver levels to make sure her body isn’t rejecting and that her body is happy overall.

SOOOOOO – here we go!  

#BEAstrong

xo

Hillary

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