Friday, July 22, 2011

5 am phone calls

Are never any fun especially when they are from your childs surgeon. Grace had another huge desat epidode this morning but I guess it was worse than ever and they put her back on high flow and also back on Nitric Oxide and gave her a blood transfusion and are giving her extra diuretics. They are going to try slidenafil again and see if maybe she can tolerate it yet. PPHN is what is holding her back from home, though it is much more controlled than it was, it's still not controlled enough for her to be off of Flolan or to not desat like she has been doing. At some point she will outgrow the PPHN as she gets bigger but I'd kind of like her home before then. There are 4 more weeks left before school starts and honestly I really thought we'd have all 4 of our kids home for a bit before then, but its not going to happen.


  1. Bummer. Yuck. SO SORRY!!!

    I know that she will beat this and come home to you, but I also know you are ready for this to happen SOONER rather than LATER...

    I pray that the meds will help her get this under control quickly! I remember how awful I felt when the phone would ring early in the morning like that.

    Hang in there, Miranda. You stay in my thoughts and prayers... I'm so sorry this has been so prolonged.

  2. Hoping things settle for Grace quickly. The poor little one has overcome so much its time for her to catch a break (mom and dad too).

    Thinking of you and keeping you in my thoughts.

    Renee B