Kireta and I just got back from the cardiologist today. We remained optimistic on Logan's oxygen levels because his coloring looks so good. Unfortunately, the echo cardiogram did not reflect this. Logan's oxygen levels fell to the high seventies, about a 10 point drop in three weeks. Also, the echo confirmed what we had been fearing; that his pulmonary artery has stayed the same size, failing to grow and holding in steady at 6mm. His pressure-
gradient has now risen to 76% due to the muscle beneath the pulmonary artery growing.
What this means for us is that Logan's surgery will be much sooner than expected. We were hoping Logan could make it to the 6-8 month mark, but now it looks like it'll be before he reaches 4 months of age. Dr Carrie
Villavincencio (our cardiologist who is wonderful by the way) would like to see Logan in two weeks, and we'll determine when he'll need surgery. Currently this could be as early as late August, or as late as late September. We would like to see him go to at least 4 months of age, however, Dr Carrie doesn't want to risk flu season. If you've been reading the blog earlier on, you'll know that he had a 50/50 chance at having a valve-sparring technique done, as
opposed to the
transannualr patch. At this point, however, since he is still very young and small, his odds have decreased to about a 20% chance of having the valve-sparring technique. (This requiring only one surgery and the
transannular of having at least one more between the ages of 3-14). Today we also learned that Logan's valve ABOVE the
pulmonary artery (called the supra valve) is also narrow. This means that he has narrowing in all three places (the muscle beneath the pulmonary artery, the
pulmonary valve itself, and the supra valve above). We're told this is also common, but nonetheless contributing to his high pressure-
gradient.
Now for a bit of good news. Logan is up to 9 lbs, 10 oz, and is 21 3/4 inches long. He's growing like a weed, and is doing great with his "tummy time" and other physical therapies. We've decided to go with Dr. Max Mitchell as Logan's surgeon. He's very bright, and has been practicing for 22 years. He's a bit younger than the other chief surgeon at Children's, but we hope this will aid Logan's chances for the valve-sparring technique. Also, by doing the surgery earlier than expected, Logan will not yet be rolling over, which will certainly aid in his six week recovery. We can expect Logan to be in the hospital for one week after surgery prior to coming home. Another great piece of news is that he will not require any life-long drugs, only a bit of
Lasik for a few weeks following surgery (which will aid in removing any fluid from his lungs.) Also, if Logan does require the
transannular patch, we're hoping that he'll be able to hold out long enough for his second surgery until the technology comes to the USA to do the procedure through his leg (as opposed to another open-heart surgery). Currently in Europe they are doing this procedure through the leg in adults.
Again, your thoughts and prayers are most appreciated!!! Remember, the success rate for this surgery is extremely high, and we know Logan will get through this with God's Grace. Thanks again to all who read this! We'll keep you updated...
Kireta and I just got back from the cardiologist today. We remained optimistic on Logan's oxygen levels because his coloring looks so good. Unfortunately, the echo cardiogram did not reflect this. Logan's oxygen levels fell to the high seventies, about a 10 point drop in three weeks. Also, the echo confirmed what we had been fearing; that his pulmonary artery has stayed the same size, failing to grow and holding in steady at 6mm. His pressure-gradient has now risen to 76% due to the muscle beneath the pulmonary artery growing.
What this means for us is that Logan's surgery will be much sooner than expected. We were hoping Logan could make it to the 6-8 month mark, but now it looks like it'll be before he reaches 4 months of age. Dr Carrie Villavincencio (our cardiologist who is wonderful by the way) would like to see Logan in two weeks, and we'll determine when he'll need surgery. Currently this could be as early as late August, or as late as late September. We would like to see him go to at least 4 months of age, however, Dr Carrie doesn't want to risk flu season. If you've been reading the blog earlier on, you'll know that he had a 50/50 chance at having a valve-sparring technique done, as opposed to the transannualr patch. At this point, however, since he is still very young and small, his odds have decreased to about a 20% chance of having the valve-sparring technique. (This requiring only one surgery and the transannular of having at least one more between the ages of 3-14). Today we also learned that Logan's valve ABOVE the pulmonary artery (called the supra valve) is also narrow. This means that he has narrowing in all three places (the muscle beneath the pulmonary artery, the pulmonary valve itself, and the supra valve above). We're told this is also common, but nonetheless contributing to his high pressure-gradient. 
Now for a bit of good news. Logan is up to 9 lbs, 10 oz, and is 21 3/4 inches long. He's growing like a weed, and is doing great with his "tummy time" and other physical therapies. We've decided to go with Dr. Max Mitchell as Logan's surgeon. He's very bright, and has been practicing for 22 years. He's a bit younger than the other chief surgeon at Children's, but we hope this will aid Logan's chances for the valve-sparring technique. Also, by doing the surgery earlier than expected, Logan will not yet be rolling over, which will certainly aid in his six week recovery. We can expect Logan to be in the hospital for one week after surgery prior to coming home. Another great piece of news is that he will not require any life-long drugs, only a bit of Lasik for a few weeks following surgery (which will aid in removing any fluid from his lungs.) Also, if Logan does require the transannular patch, we're hoping that he'll be able to hold out long enough for his second surgery until the technology comes to the USA to do the procedure through his leg (as opposed to another open-heart surgery). Currently in Europe they are doing this procedure through the leg in adults.
Again, your thoughts and prayers are most appreciated!!! Remember, the success rate for this surgery is extremely high, and we know Logan will get through this with God's Grace. Thanks again to all who read this! We'll keep you updated...
Christopher and Kireta,
ReplyDeleteWe are long-time friends from college of your Uncle Tim. He contacted us this week and wrote about your son Logan. Tim did that because we have three sons, the youngest of whom - Matthew - has multiple disabilities. Over a period of years Matthew was diagnosed with several mental retardation, autism and Ruvacaba Syndrome. Matthew is now 21 and just graduated from high school. This week he began a new adult program which he seems to like so far. Matthew cannot talk or care for himself. He is not toilet trained nor will he ever progress mentally beyond a two-year old, most likely. He can be quite challenging and needs constant support and attention. But ... without any remorse or hesitation we can say that we love and cherish him very much. He is an amazing presence in our lives and we don't know what we would ever do without him. While he tries our patience at times, he also smiles at us in a way that melts our hearts. While he is full of intense energy and never stops moving (even when he sleeps) and easily tires us out, he also has opened doors in our hearts and understanding that we never knew were there.
Like the poem you have posted about traveling to Holland when thinking that Italy was the destination instead, our lives have been taken in directions that we never thought we would go. But the journey has been far deeper and richer han we ever could have imagined.
We pray that your unexpected journey will be very much the same.
Your Uncle Tim wrote us because he thought that because of our experience we might be able to offer encouragement and wisdom to you as you begin this journey. Absolutely, we are more than willing to keep in touch with you, to pray for you and to answer any questions we can. If we can be of support in any way, to help you navigate the uncharted territory you are in or to remind you that you are not alone in this, we certainly will.
Please be in touch if you want, if you can. Our joint email address is ichmginger@aol.com.
We wish you only rich blessings with Logan. He truly is a wonderful gift from God.
Sincerely,
Michael and Kathy Gingerich
Hershey, PA