gijanet
Well-known member
Wasn't quite sure what forum to put this one in. We really need one called the "Land of Limbo." 
Thank you guys again so much for the prayers and for worrying about us. They are so appreciated - and they were answered, but I guess I should have been a little more specific than just asking that Katie's ventricles not show signs of weakening and for another month or two before surgery. Because that IS the good news.
Thankfully, we are not in crisis mode, so we do get another month or two...........maybe three, but surgery is pretty much a definite after that. Dunno if you guys remember, but last visit in November, Katie's valve leak looked slightly better and was categorized at a 2+, so I started getting my hopes up that this was a new trend and it would continue to get better. Well, sad to say, today's echo put it back at a full 3, bordering on 3+. I know that echoes are not always the final word in accuracy, but I saw it for myself. There is an awful lot of both blue and red blood sliding back through that valve. Even though the fontan will put a halt to the blue blood in Katie's heart, it will not do a darn thing about the amount of blood regurgitating back through, even if it is all red at that point. More bad news: Katie is starting to show signs of clubbing in her fingers - just categorized at a 1+, but this is the first time she has ever exhibited this, so this was a bit of a blow. I've been thinking her fingers looked a little more blue - guess it wasn't my imagination.
The good news: Katie's oxygen sat readings were at 79 (taken on her left hand) and 83 (taken on her right foot)...........pretty much the norm for us. Her blood pressure looked good: 97/63 , and her ventricles are not significantly enlarged, thus no visible signs of weakening.
Sooooooooooo, while this was not totally unexpected news, it was still very unwelcome for the most part. The game plan now: Dr. W (our PC) will contact Dr. Bove (our surgeon in Michigan) and send him all the latest data and echo. Dr. Bove then reviews it and contacts our PC. Our PC then, in turn, relays all of this to us. This usually takes three to four weeks because of all their professional courtesy protocols. After three weeks, I usually grow impatient and e-mail Dr. Bove to get it straight from the horse's mouth; thus, when our PC calls, I already know what he is going to tell me.
Our PC hates to speak for Dr. Bove, but we always push him for his thoughts anyway. He doesn't think that Dr. Bove is going to allow us to go much past another two or three months. He thinks that Dr. Bove will most likely want to do another TEE, a 3-D echo, yet another dreaded cath (her groin was assaulted last time before they finally conceded and went in through the neck), and then a valve replacement with the extracardiac fontan. UGH! UGH! UGH! You would really think that after three surgeries this would get easier, but it doesn't, I'm here to tell you!
We received one more blow today - one I was totally unprepared for. Our beloved PC - the one who has been with Katie since birth and knows her heart and unusual plumbing better than anyone else - the one who always returns my calls, even if it is 6:30 at night from his cell phone while he is driving home from the hospital - is leaving Cook Children's and moving to Columbia, South Carolina. What a blow! We all were in tears when he told us. He wanted to tell us personally rather than our finding out through the gossip mill or from a hospital letter. It is a good move for him, but, oh, what a loss for both Cook's and us. It won't happen until this summer, so, as long as we have to go through with this blasted surgery, I am hoping that he will be here to see us through our local post-op care as he has three times before. WAH!
Well, that's about all the news for now - both bad and good. Katie was good as gold during the visit, and, as usual, was quite the little ham and manipulator. Katie entertained the entire office and sang the Sponge Bob theme song as well as the Sponge Bob Christmas song and bowed several times after her performance. She conned the echo tech and nurses out of 4 lollipops and 12 stickers. One of the nurses even opened a new box of stickers looking for Sponge Bob......................sigh! She is going to make a great politician, salesman, or actress some day.
Anyway, sorry for the book. Thanks for reading and thanks again so much for the prayers. I guess we will continue to need them for a tad bit longer. Hugs to all. J.
Thank you guys again so much for the prayers and for worrying about us. They are so appreciated - and they were answered, but I guess I should have been a little more specific than just asking that Katie's ventricles not show signs of weakening and for another month or two before surgery. Because that IS the good news. Thankfully, we are not in crisis mode, so we do get another month or two...........maybe three, but surgery is pretty much a definite after that. Dunno if you guys remember, but last visit in November, Katie's valve leak looked slightly better and was categorized at a 2+, so I started getting my hopes up that this was a new trend and it would continue to get better. Well, sad to say, today's echo put it back at a full 3, bordering on 3+. I know that echoes are not always the final word in accuracy, but I saw it for myself. There is an awful lot of both blue and red blood sliding back through that valve. Even though the fontan will put a halt to the blue blood in Katie's heart, it will not do a darn thing about the amount of blood regurgitating back through, even if it is all red at that point. More bad news: Katie is starting to show signs of clubbing in her fingers - just categorized at a 1+, but this is the first time she has ever exhibited this, so this was a bit of a blow. I've been thinking her fingers looked a little more blue - guess it wasn't my imagination.
The good news: Katie's oxygen sat readings were at 79 (taken on her left hand) and 83 (taken on her right foot)...........pretty much the norm for us. Her blood pressure looked good: 97/63 , and her ventricles are not significantly enlarged, thus no visible signs of weakening.
Sooooooooooo, while this was not totally unexpected news, it was still very unwelcome for the most part. The game plan now: Dr. W (our PC) will contact Dr. Bove (our surgeon in Michigan) and send him all the latest data and echo. Dr. Bove then reviews it and contacts our PC. Our PC then, in turn, relays all of this to us. This usually takes three to four weeks because of all their professional courtesy protocols. After three weeks, I usually grow impatient and e-mail Dr. Bove to get it straight from the horse's mouth; thus, when our PC calls, I already know what he is going to tell me.
Our PC hates to speak for Dr. Bove, but we always push him for his thoughts anyway. He doesn't think that Dr. Bove is going to allow us to go much past another two or three months. He thinks that Dr. Bove will most likely want to do another TEE, a 3-D echo, yet another dreaded cath (her groin was assaulted last time before they finally conceded and went in through the neck), and then a valve replacement with the extracardiac fontan. UGH! UGH! UGH! You would really think that after three surgeries this would get easier, but it doesn't, I'm here to tell you!
We received one more blow today - one I was totally unprepared for. Our beloved PC - the one who has been with Katie since birth and knows her heart and unusual plumbing better than anyone else - the one who always returns my calls, even if it is 6:30 at night from his cell phone while he is driving home from the hospital - is leaving Cook Children's and moving to Columbia, South Carolina. What a blow! We all were in tears when he told us. He wanted to tell us personally rather than our finding out through the gossip mill or from a hospital letter. It is a good move for him, but, oh, what a loss for both Cook's and us. It won't happen until this summer, so, as long as we have to go through with this blasted surgery, I am hoping that he will be here to see us through our local post-op care as he has three times before. WAH!
Well, that's about all the news for now - both bad and good. Katie was good as gold during the visit, and, as usual, was quite the little ham and manipulator. Katie entertained the entire office and sang the Sponge Bob theme song as well as the Sponge Bob Christmas song and bowed several times after her performance. She conned the echo tech and nurses out of 4 lollipops and 12 stickers. One of the nurses even opened a new box of stickers looking for Sponge Bob......................sigh! She is going to make a great politician, salesman, or actress some day.
Anyway, sorry for the book. Thanks for reading and thanks again so much for the prayers. I guess we will continue to need them for a tad bit longer. Hugs to all. J.
