Elizabeth is doing SO much better! She was able to wean off of the ventilator on Friday! She was put on 12L of high flow oxygen and since Friday has been able to wean down to 2L of oxygen via regular nasal cannula. So during the course of last week on top of germs in her lungs another culture came back for pseudomonas from the bronchoscopy that they did here. So she is now getting IV antibiotics, inhaled antibiotics and a vest treatment to loosen up all the gunk in her lungs. On Friday she was very tried and weak and slept alot after they removed the breathing tube and ventilator. She has started watching her movies on the Ipad, smiling and has said a few words. She is also weaning off of the sedation and getting ativan and methadone to help with that. Her little voice is pretty raspy from the tube being in there, so she hasn't said a whole lot yet. She was able to start sitting up on her own today and moving around some. She did try to walk earlier to Matt and it was SO sweet. She is still pretty weak and it will take a bit for her to get over this. We are beyond thankful she was able to fight this and is recovering. The plan for now is to hopefully be moved from PICU tomorrow to a regular hospital room, finish out the IV antibiotics this week and possibly be discharged home on Friday if she continue to do well and doesn't need more oxygen. We will have to come back in December for the evaluation and testing that was originally scheduled for this week. Her next appts will include a appointment with ENT here to get a second opinion on her airway, and hopefully some good news options for fixing it. And we will also meet the new cardiologist and get a check on the aortic root dilation. After her checkup in December we will most likely come back more often for a while to be sure that this illness hasn't stirred up possible rejection. Rejection is a big fear for us, and we pray that this illness was just that a bump in the road for her amazing gift of lungs will be undamaged and continue to provide her with MANY more years!
This was one of the scariest times since transplant for us. Its so easy to get caught up in the everyday things when she is well. This was just another reminder to all of us just how quickly things can change, and why we need to make the most of each day we have with her. Just like all of us need to remember its not the quantity of life that matters but the quality. Things like money, houses, cars, and what you have really don't matter at the end of the day. This amazing little girl, her sister, Matt and our family/friends are the important things in my life. I really hope that anyone who knows Elizabeth, or any of our transplant friends, learn from these amazing kids to appreciate all you have in life and know how quickly it can all change!