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.
Monday, September 19, 2011
Since my last post Matt and I have both returned to work. So life is somewhat back to normal for us. It has definately been an adjustment! Matt works day shift and I work midnight shift, so one of us is always here with Elizabeth. And I went back to drill for the Navy Reserves last weekend. She has had numerous appointments over the past few weeks with hematology, pulmonology, physical therapy and occupational therapy. We now sorta have a schedule down for her therapies and all of the equipment she needs has been or will be ordered this week. Elizabeth got her 1st dose of IVIG since being back home on Wednesday last week. She had to be admitted to the hospital for the day to get it done, we are hoping to have it set up to do in home by her next dose in October. We noticed that she had a cough that seemed to get worse and on Friday we went to see her pulmonologist who did a viral panel. It came back as rhinovirus basically she has a cold, which in the grand scheme of things isnt the worst possible thing, but its still not good for her. She ran a fever on Friday night and was pitiful on Saturday and needed to wear oxygen all day to keep her oxygen saturation levels up. She slept alot on Saturday and yesterday seemed to be doing alot better. Other than dealing with issues as they arrive with insurance, medications, and equipment life here is headed to a much more "normal" for us.