gijanet
Well-known member
Heart forum for an update? pre-surgery? brick wall?
Well, we finally got past Dr. Mee's guard dog and he personally answered our last e-mail. As I strongly suspected all along, he could not make any promises about Katie's valve, even if we would have been willing to do another TEE, which, of course, we would have done in a heartbeat (no pun intended!) if that would have allowed him to give us an answer. (With her heart on the right and in backwards, along with her numerous other defects, it just makes it so blasted hard to determine anything via cath or TEE - most things are an "on the table" type of thing.) He basically said that a valve repair would be optimal in a child this age, but "the problem is that an absolute, definitive decision cannot be made from films. There are a lot of variables. The best decision is made under direct vision in the operating room."
He also said that if we were confident with Dr. Bove, then that is where we need to have Katie's surgery. He also apologized for not being able to take our doubt and concern away. The last part made me cry............well, maybe all of it did, as I was so hoping that he would be able to say, "Yes, I have seen this before and it is doable." But his compassion touched my heart as it is so obvious he knows what we are going through...............
I had read that he was a cold fish, but I don't believe it at all......not after that response...............
So, I guess this is our brick wall. Since Dr. Bove knows Katie's anatomy through two previous operations - and he is one of the very best - kids come in from all over the world, seeking out his expertise - I feel that we have to stay put. We are now scheduled to leave for Michigan via Amtrak on the 9th - since Katie can't fly - spend a glorious 24 hours on the train - supposed to be 18 or so, but Amtrak is NEVER on time on the long hauls - we do speak from experience!!
Actually, it's not bad since we get a sleeper; that way, Katie can play on the way up and lie down on the way back. Get in to MIchigan on the tenth. Pre-op on the 11th; thankfully, no cath since we just had one last year. And surgery on the 12th - the extracardiac fontan plus valve re-repair or replacement of her common AV valve (mitral and tricuspid merged). We have been told to expect a stay of two to six weeks for recovery...........argh! Obviously, I am hoping and praying for two!!!! It will depend in large part as to whether Katie develops PLE (Protein losing enteropothy) after the fontan - about 1/4 of the kids do, pleural effusions - which we had last year, and getting her INR adjusted if we end up with that mechanical valve, which is looking likely, but I am praying not.............
My mom is staying with Trip - my twelve year old son, so, hopefully, he won't feel too abandoned. He just gets shoved to the backburner so often, but I don't know what else to do.............it just can't be helped.................
I think one of the hardest things about going into this surgery is that Katie is doing so well. She is a bundle of energy (I don't know how with sats in the seventies, but she is!) and quite the little toot as so many of you know by now. She had a blast at the beach and decided that we need to sell our house and move their permanently.............ahhhhh! How I wish we could! BTW, the seaweed was really bad this year.........hasn't been that bad in about six years.
I'm a wreck. I am scurrying to try and get Katie into the dentist before we go, just in case we end up with that mechanical valve. Better to do it now. I had meant to do this earlier, but getting that second opinion took up what little is left of my mind............. and then we stop her aspirin tomorrow, so that will make me nervous as a whore in church .............sweating a stroke on top of everything else I have to worry about............sigh!
Anyway, that is where we stand.............sigh - yes, again!!!! Please keep us in your prayers. Any prayer chains are welcome. I will be falling apart over the next week...........like that is not showing already..................
Thanks for bearing with me - or in Katie's case, it should be baring. Many hugs.
Wandering around looking for her mind.............Janet
Well, we finally got past Dr. Mee's guard dog and he personally answered our last e-mail. As I strongly suspected all along, he could not make any promises about Katie's valve, even if we would have been willing to do another TEE, which, of course, we would have done in a heartbeat (no pun intended!) if that would have allowed him to give us an answer. (With her heart on the right and in backwards, along with her numerous other defects, it just makes it so blasted hard to determine anything via cath or TEE - most things are an "on the table" type of thing.) He basically said that a valve repair would be optimal in a child this age, but "the problem is that an absolute, definitive decision cannot be made from films. There are a lot of variables. The best decision is made under direct vision in the operating room."
He also said that if we were confident with Dr. Bove, then that is where we need to have Katie's surgery. He also apologized for not being able to take our doubt and concern away. The last part made me cry............well, maybe all of it did, as I was so hoping that he would be able to say, "Yes, I have seen this before and it is doable." But his compassion touched my heart as it is so obvious he knows what we are going through...............
I had read that he was a cold fish, but I don't believe it at all......not after that response...............
So, I guess this is our brick wall. Since Dr. Bove knows Katie's anatomy through two previous operations - and he is one of the very best - kids come in from all over the world, seeking out his expertise - I feel that we have to stay put. We are now scheduled to leave for Michigan via Amtrak on the 9th - since Katie can't fly - spend a glorious 24 hours on the train - supposed to be 18 or so, but Amtrak is NEVER on time on the long hauls - we do speak from experience!!
Actually, it's not bad since we get a sleeper; that way, Katie can play on the way up and lie down on the way back. Get in to MIchigan on the tenth. Pre-op on the 11th; thankfully, no cath since we just had one last year. And surgery on the 12th - the extracardiac fontan plus valve re-repair or replacement of her common AV valve (mitral and tricuspid merged). We have been told to expect a stay of two to six weeks for recovery...........argh! Obviously, I am hoping and praying for two!!!! It will depend in large part as to whether Katie develops PLE (Protein losing enteropothy) after the fontan - about 1/4 of the kids do, pleural effusions - which we had last year, and getting her INR adjusted if we end up with that mechanical valve, which is looking likely, but I am praying not.............My mom is staying with Trip - my twelve year old son, so, hopefully, he won't feel too abandoned. He just gets shoved to the backburner so often, but I don't know what else to do.............it just can't be helped.................
I think one of the hardest things about going into this surgery is that Katie is doing so well. She is a bundle of energy (I don't know how with sats in the seventies, but she is!) and quite the little toot as so many of you know by now. She had a blast at the beach and decided that we need to sell our house and move their permanently.............ahhhhh! How I wish we could! BTW, the seaweed was really bad this year.........hasn't been that bad in about six years.
I'm a wreck. I am scurrying to try and get Katie into the dentist before we go, just in case we end up with that mechanical valve. Better to do it now. I had meant to do this earlier, but getting that second opinion took up what little is left of my mind............. and then we stop her aspirin tomorrow, so that will make me nervous as a whore in church .............sweating a stroke on top of everything else I have to worry about............sigh!
Anyway, that is where we stand.............sigh - yes, again!!!! Please keep us in your prayers. Any prayer chains are welcome. I will be falling apart over the next week...........like that is not showing already..................
Thanks for bearing with me - or in Katie's case, it should be baring.
Many hugs.Wandering around looking for her mind.............Janet
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