Friday, March 7, 2014

Yesterday and Today

A PICC line was discussed in rounds yesterday and Dr. Prieto wanted to see Hope's echo today before making that decision.  Sadly, Hope's echo did not look much different today than on Wednesday so a PICC line was ordered. 

Hope's numbers were not great yesterday, but today they are looking much better.  She spent the day telling me how hungry she was and asking for a cheese sandwich, chips and cheese, chocolate bar, macaroni and cheese, a brownie, and anything to drink.  I felt so bad telling her no...she had to wait until after they placed the PICC line.

Sadly, her IV blew in her hand so she needed a new one.  They put this one in her foot and she really likes that much better.  The one in her left hand made it hard for her to do stuff and she didn't like it at all.  

Fast forward to 5pm.  It has been crazy in the PICU today.  Two new little needed an urgent Septostomy in the cath lab and the other one was 'just' an admit.  Dr. Stewart was also performing a Glenn on a little one, so it was totally crazy.  Hope will not get a PICC line today.  I am actually perfectly fine with that...I feel like I want to give the medicine the weekend and pray with everyone that her heart gets stronger.

I also want to make sure I thank so many of the fabulous people at the Clinic.  Child Life and Occupational Therapy have been awesome.  We didn't have to use these services when Hope was in the hospital before because she was so young.  They are always available and come to the room to play with her anytime.  She has had Art Therapy and Music Therapy as well and loved them both.

I want to thank the great nurses that Hope has had during her stay.  Kate has been her night nurse and is great.  She doesn't bother us too much and we appreciate that more than I can say.  Liz was her nurse yesterday and is a great lady.  She played with Hope when we ran out with the boys to get a bite to eat.  She is also a great listener and I can tell that she loves working with kids.  Finally...Oksana.  So far she is my favorite nurse and is just so perky.  We had her today and will have her tomorrow too.  All of Hope's nurses have also been keeping an eye on Weston.  He is getting ready to get back on the transplant list.  Be sure to keep him in your thoughts and prayers...he is an amazing little guy and his parents are so nice.

I HUGE THANK YOU to Margaret Andorf and Joellen Podoll.  Both of these ladies spend a lot of time with their girls at the Clinic and still came to visit Hope and I.  Margaret brought Hope some awesome Dora stuff and she loves it all.  

Last, but definitely not least...THANK YOU to my family.  They are the best and are always there for us.  Most everyone has visited and they have made sure Hope is happy and they take stress away from me.  They also make sure we eat (Slyman's was excellent) and have someone that will be there for any help we need.

Please keep Hope and our family in your thoughts and prayers.  THEY WORK!!!  We have witnessed so many miracles in Hope's life and so many of her heart friends.


  1. Praying things get much better over the weekend. Praying for strength for your family too.

  2. Hi Paula, you all are in my prayers. I just found this and wanted to share:
    Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson

    Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. ~Anne Lamott