I have a small bit of transplant experience, plus we were extensively counseled going into this, so I am well aware that pretty much no one gets through transplant without some complications. And well, Maggie is no exception. We spent the day in the pediatric ICU today after a long night of very high unbreakable fevers and fast breathing. The PICU can give a higher flow oxygen that the BMT unit, so even though she is able to maintain her oxygenation on her own, the higher flow makes it easier for her. The team still thinks this is possibly engraftment syndrome, but she has also already reactivated her CMV and infection is also possible. So tonight I will try to sleep in a chair in the tiny closet they call our PICU room. All in all though, I think she is doing okay for now – we sort of expected her to have respiratory issues with her mucositis given her Hurler’s and we expected her to reactivate her CMV. And I’m holding on to hope maybe she will engraft on the early side if this is really engraftment syndrome. So we’ll continue to spend the days/nights cuddling:


6 thoughts on “PICU

  1. Tracy, thank you so much for keeping us informed. We think of Maggie constantly and we are sending love, prayers and lots of positive energy. We love you all! Tracy, you are amazing and Maggie is lucky to have you as her Mom!!!


  2. So glad to hear that the PICU oxygen is making it easier for Maggie to breathe. Hoping that she’ll be well enough to head back to 5200 soon!!


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