Thursday, May 19, 2011

Grace continued to have episodes of extreme irritability Monday night and into Tuesday morning and a fever. Tuesday morning I called Adam and told him that I really thought Grace would benefit from being held, she is after all a baby. Babies, especially our babies thrive on being held. Alot. Grace had been held for all of 90 minutes her entire life. So, Adam talked to her nurse and they got her out of bed and into daddy's arms. For the first time. He held her for about 4 hours and then I held her for about 3. In that whole time she never needed a PRN of anything and she didnt have any fits. She did have a small fever, but they do get warmer when being held, obviously. In that time, her dr's were doing thier homework. They think now that possibly, the fever, the rash, the inconsolable crying could have been caused by the Viagra. They think she might not have been absorbing it correctly, and they have stopped it to see if that helps. If it is as easy as it is the Viagra then great, we don't have to go back in to investigate her patch. BUT now they will have to find a way to control her PPHN since she cannot stay on inhaled Nitric. So her vent settings are still quit high and her Nitric is back at 10. No extubation anytime soon. She was upgraded to a larger ET tube today (breathing tube) so technically she was extubated, only to be reintubated immediately. This is the 3rd time she's had her tube changed out, and she's been intubated for almost 2 months.
She got her last chest tube removed, I hope she is more comfortable with that gone. But I really hope when they start feeding her ( not sure when that will be) her Chylothorax does not come back because then she will ahve to get another one.
Grace has to get 2 shots of Lovenox a day to try to help the clot in her leg. She will get them for the rest of the time she has the line in her leg and she hates them. She will likely look like she has chicken pox from all the red dots from the shot.

1 comment:

  1. Its very easy to forget when your child has so many medical issues and equipment that underneath it all they are still a baby wanting to be held and loved. It seemed that when we finally got to hold and snuggle Braden he was quite less irritable as well. Im glad you got to hold her as long as you did. Im sure all 3 of you needed that.

    Prayers continue for Miss Grace and your family!