Trip to Vanderbilt -Nashville, TN

Elizabeth continues to do well, and is making progress with PT and OT. We stayed the night in Nashville last night since Elizabeth had appointments with Cardiology and ENT today at Vanderbilt. Both appointments went well. We went to see ENT since there is still a small opening in her throat where her trach was. It has gotten significantly smaller but has not totally closed. He wants to give it a little more time, and make it through the winter without putting her in the hospital. So his plan is to schedule her for surgery in March to have it closed, which means an overnight stay inpatient at Vanderbilt. When she was seen by cardiology they did an echo of her heart, and compared it to what they had in November/Decemeber (when she was on the verge of going on ECMO and so so sick). Her Dr was impressed with how well she is doing and how much better her heart looks compared to before transplant. He also wanted her to wear a halter monitor for 24 hours, so that we can better determine what we need to do if anything with the heart medication she is on that is helping with her blood pressure, and irregular heart beats.
Of course we couldn't visit Vanderbilt with out seeing two of the most important people who helped us and Elizabeth make it from Nashville to Houston. Our PICU case manager Diane, and our Pulmonary Fellow Dr Soares. I don't think either of them know just how much they mean to us. They both helped us so much through all of Elizabeth's hospitalizations there, the decision to get her trach/vent and then the agonizing stay in November/December when Elizabeth was so sick and unstable we thought we were going to lose her.  It was good to see them, and be able to show the progress that Elizabeth has made. We also had a visit with our friend Chris at Harlow Salon in Nashville ~ I HIGHLY RECOMMEND HIM :). I met him back in July and stopped by again in November to get my hair cut/colored while we were staying in Nashville and he became a big supporter of Elizabeth. He has become a great friend to us and we were glad to get to visit for a little while.

   Before we left for Nashville I was dreading the trip. The memories of the last time we were there started to flood back. I hope and pray we are never in that place again, seeing Elizabeth so sick and on the verge of ECMO and struggling to stay alive. But deep down in my heart, I know that transplant is not a cure, and we will at some point in her life be faced with these things again in some form or fashion. I try so hard to keep those thoughts out of my head and just try to enjoy the now, but its a work in progress.  I realize that every day with her truly is a gift, and I am  trying my best to not worry so much about tomorrow, but its easier said than done. I have this overwhelming fear of every Dr appointment she has, that they will find something else "wrong" with Elizabeth. Our trip to Houston for her 6 month evaluation is coming up in 9 days and I almost feel sick thinking about it. I sometimes wonder if this fear I have will ever go away, but at the same time this fear is a constant reminder to me to be thankful even for the bad days.