Today marks 3 months since Madi had her second repair surgery! It seems like so long ago some days and not on others! We have had a busy week and will be pretty busy in the weeks to come. Big news for this week, Madi is off all of her drips! That means the only medicines she is getting are being delivered through her J tube. She had a new, longer J tube put in on Tuesday because she kept having problems with her other one leaking and so far this one has been much better! Continue reading »

It has officially been 2 weeks since Madi had her trach placed. She is doing really well. Right after her surgery she was placed on paralytics and sedation and was able to come off the paralytic last week. They have slowly been weaning her sedation as she tolerates it and that is actually the ONLY reason we are still in the ICU. This is the first time in Madi’s life that she hasn’t been so critical that she needed constant intensive care. If she continues to tolerate the weaning schedule she should be off of all her drips by sometime next week. She came off of her morphine yesterday so she has 2 drips left to wean. She is waking up more, and loves looking at herself in a mirror. She has had her trach changed for a new one twice now and will have another change on Tuesday. Continue reading »