Wednesday, June 29, 2011

3 months old

Grace is off of Fentanyl and Dex and she should be off Versed by the weekend! Then she will only have Methadone to wean. She is on the Bosentan for her pphn since she is allergic to Sildenafil.Her ECHO on Friday was good so we are waiting to hear from Cardiology on the Flolan weaning process. She's moving along! She had her Gtube clamped for a few days and her stomach seemed to be moving her bile and saliva through and tolerating all her meds. Until yesterday when she started retching after her meds and then after her 9pm meds she vomitted it all, and it was a little scary because then she immediately started desatting and not coming back up at all so we feared she may have aspirated on her meds. A chest xray showed that she didn't and actually showed her left lung was much larger than it used to be. How functioning it is, is still not known but it is there! Still don't really know what happened though, because after a bit we got her settled back down no problem. Here are some pictures from last night.


  1. She is so cute! Love that headband!!! Lots of prayers continue Grace's way!

  2. Grace's flower headband is so adorable. Sending lots of prayers your way.

    Leslie Gibson

  3. Grace looks great!! She is beautiful. So glad things are going well.

    Mom to Andrew - CDH Survivor