Friday, September 30, 2011

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.

Monday, September 19, 2011

New "Normal" and a Cold

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.

Its an amazing feeling to sleep in my own home, in my own bed and wake up at night and look over to see the most precious little girl sleeping in her bed next to me. Everyday I am grateful for her donor family, everytime I see her smile or watch her sleep I am reminded of just how important those "small things" are. I know her donor family would love to see those things happening with their child, I am so thankful to them for giving my daughter a second chance.