Thursday, May 16, 2013
No more surgery for now
Yesterday our surgeon meticulously evaluated Melia's echocardiogram as well as her arterial and venous oxygen levels and determined that another tightening at this time is not necessary. Our hope is that over the next year that this banding plus her own growth will get the left ventricle to the 85-100% function needed to be a systemic pump so her heart is ready for the double switch without repeating this surgery again. Melia has done beautifully with her recovery. The hardest thing for her are the frequent nurse visits, redressing her central line and just wanting to go home. We are checking another echo this morning and if that looks good then we can get rid of a lot of her lines.
Wednesday, May 15, 2013
Second Heart Surgery
We are in the hospital and Melia is recovering from her second heart surgery. She had a surgery to tighten her band in an effort to increase her left ventricular mass and better prepare her heart for a Double Switch in 1-2 years. Our doctor, Jim Hammel, discussed with us pre-operatively the fact that it's best to do a double switch in infancy but since we did not have that option the second best thing we can do is slowly train up the left ventricle over 2 years so she can still get a double switch when she is young. The younger a patient the better the heart adapts to change.
So, with that information and the consensus opinion of several doctors we decided to move forward with her second banding. During the surgery we were a bit anxious because it seemed to be taking longer than we expected. She was away from us for about 2 1/2 hours. We had friends and family praying for us and our anxiety subsided by God's grace. In hindsight, the surgeon told us it took longer because he was testing the velocity over the band to decide how tight he could safely make the band. He also had to dissect away scar tissue that was present from her first surgery. These two factors meant a longer surgery but she did very well.
We are now 2 days post-op and Melia is more alert, smiling, talking and hungry. Those first two days it was hard to watch our daughter be sad. sleepy and uncomfortable. But, the reality is that two days is a pretty short amount of time for her to be "out of it" following a heart surgery.
Melia has had great "numbers" since surgery and her chest x-ray as well as her echos look good as well. In fact, she is doing so well that the surgeon told us he wants to repeat an echo today to assess whether or not he should take her back to the OR for one more stitch in an effort to tighten the band just a touch more. If he does this now there is no scar tissue to dissect away from the heart and the chest would be easy to open up since it is not healed up yet. She also still has all her lines in and her catheter. If he decides to do this it might decrease the possibility that he would have do to another PA banding a year from now. On the other hand, too much stress to the ventricle could cause it to fail (very bad) and there is a chance that this band plus her growth over the next year would tighten it enough to adequately prepare the heart for a double switch without having to band again next year. This decision is part of the "art of medicine" and we are thankful for an experienced surgeon that will help us make a decision.
I would tell anyone in our situation that the first and best thing you can do is give it all up to God and invite many to pray for you. The other thing I've learned is that the anticipation of surgery (fearing the future and all the possible things that could go wrong) is harder and more life draining than actually being the the midst of surgery/hospital care. It just does no good to worry and fear. It is so much better to trust and give thanks for the days and moments we are given with our loved ones here on earth. I need to reread this next time we are anticipating surgery to remind myself of this truth!
So, with that information and the consensus opinion of several doctors we decided to move forward with her second banding. During the surgery we were a bit anxious because it seemed to be taking longer than we expected. She was away from us for about 2 1/2 hours. We had friends and family praying for us and our anxiety subsided by God's grace. In hindsight, the surgeon told us it took longer because he was testing the velocity over the band to decide how tight he could safely make the band. He also had to dissect away scar tissue that was present from her first surgery. These two factors meant a longer surgery but she did very well.
We are now 2 days post-op and Melia is more alert, smiling, talking and hungry. Those first two days it was hard to watch our daughter be sad. sleepy and uncomfortable. But, the reality is that two days is a pretty short amount of time for her to be "out of it" following a heart surgery.
Melia has had great "numbers" since surgery and her chest x-ray as well as her echos look good as well. In fact, she is doing so well that the surgeon told us he wants to repeat an echo today to assess whether or not he should take her back to the OR for one more stitch in an effort to tighten the band just a touch more. If he does this now there is no scar tissue to dissect away from the heart and the chest would be easy to open up since it is not healed up yet. She also still has all her lines in and her catheter. If he decides to do this it might decrease the possibility that he would have do to another PA banding a year from now. On the other hand, too much stress to the ventricle could cause it to fail (very bad) and there is a chance that this band plus her growth over the next year would tighten it enough to adequately prepare the heart for a double switch without having to band again next year. This decision is part of the "art of medicine" and we are thankful for an experienced surgeon that will help us make a decision.
I would tell anyone in our situation that the first and best thing you can do is give it all up to God and invite many to pray for you. The other thing I've learned is that the anticipation of surgery (fearing the future and all the possible things that could go wrong) is harder and more life draining than actually being the the midst of surgery/hospital care. It just does no good to worry and fear. It is so much better to trust and give thanks for the days and moments we are given with our loved ones here on earth. I need to reread this next time we are anticipating surgery to remind myself of this truth!
Friday, May 10, 2013
Three Years Old!!
Melia got to take special snacks to Happy Face School today and we ended the day with a carnival at the the big kids' school. This little girl ran all over the place, climbing and sliding down a big bounce house obstacle course and having the time of her life. Tomorrow we will open presents and have a birthday party with friends. We even got to have a special dinner with Grammy and Grandpa earlier in the week.
Miss Melia is such a treasure to us and we are blessed by each day we get to enjoy her joyful, loving spirit! Love you, Melia!!
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