We came home yesterday directly from the PICU. Sorry for the delay but I basically passed out last night and have been cleaning all day today. Five days away equals a very dirty house!
On the ride home she leaked spinal fluid about the size of 2 quarters out her spine. She is flat again, except for the bathroom. We go back to the doctor next week and he may or may not take the stitched out. It will depend on what they look like. She came home on antibiotics and oral Baclofen. I will be weaning her off the oral Baclofen over the next 2 months. I have a very rough road ahead of me. When she is on oral Baclofen and coming off of it, she has major behavior issues. Some of you know that her calves have been in atrophy, meaning, her calves are diminished to bone and spacticity. It has basically eaten away her muscle. With the pump, it could have been recovered. I am not sure what will happen now. I will also need to transfer her from Shriner's to a local Orthopedic doctor. Her hips get worse as time goes on. And again, without the pump, they will continue to get worse. I don't know what the future holds for us, but I am sure there will be more bumps in the road.
The positive, we are home! Thank you everyone for the prayers, cards, and warm thoughts! The support behind us has been great. Thank you!
No comments:
Post a Comment