Y
Yaps
like a dock, yep,like a dock..
Help Support Valve Replacement Forums:
J
JeanneImp
geebee said:
C
clouddancer22
Hi. It is 4:30 in the morning, and I can't sleep anymore. I did get 6 hours, so that is good. The appointment is at 10:30, about an hours drive.
The misunderstanding with the surgeon and the medical records is not the first time something has been messed up. I have caught them, at CHLA, giving her an intravenous med with the wrong base before. That is because I am fierce, like a mama bear. I stay by my child, each and every one (4), everytime they need me. I stay in the hospital by their side. I ask about everything. No one administers anything without me asking, "What is that? Do we need it? What is the criterion for knowing if we need it?"
When Mikaela had her first valve repair. I was there. Always. When she came out of surgery, they said she would be in ICU three days. She was there three hours. They sent her up to the floor. I was there. I asked about each and every hose, wire, and tube - "What is that? What is it for? What is the criteria for getting it out? Oh, could you call the doctor and we could check? Thank you." One by one, I got all those things out. They tried to give her Morphine. I asked why. I asked, well, what is the next step down? Could we just give her that, then if she cries alot, then we could do the Morphine? No Morphine was needed.
For her initial repair, we had a very kind, compassionate and skilled surgeon at CHLA. He did a non agressive cut to the bicuspid valve. This was done to allow for future valvioplasties to not cause leakeage. Evidently, this worked. This was why the surgeon yesterday assumed that she had not had that done. Evidently, (I asked, and the appointment went over by about an hour) he looked at the pictures of the valve, and drew pictures for me (a first) to explain why he was under that impression. A more aggressive cut would have caused something different to appear. I think he felt bad that he didn't know something that big. And that I had to point it out, on the report in front of him, because I was familiar with the report . . . I guess not everybody demands a copy of the report each time. I have a huge file of them.
I am so glad I had all the info from you guys. Part of that is why he took me much more seriously. I think an uninformed person would have had a catastrophe today. Because of our discussions, he is going to be a little more cautious. We also discussed her veins and previous caths. He will not do a big balloon, but rather, if it is called for, two balloons of smaller caliber from both sides. And I think he is going to be very cautious about accidently ruining the valve, necessitating an immidate replacement. Yes, I think he was embarrassed about being caught being ignorant, or whatever.
Ummm, back to all the questions from you. Not multiple repairs. One repair, multiple balloons. No meds, I don't know why or what there was supposed to be. Greece was awesome!!!! I am a teacher, albeit subtitute at this time, and got to be a chaparone. Oh yeah! And my daughter fund-raised all of her fare. It was a school trip. I really wanted to do this, to spend some quality time with just her, especially in light of the fact I knew the end of the valvioplasties was drawing near. Also, thank you guys for the surgeons info. Diane has pointed out that the guy from Stanford is really good. I am going to make sure I have the opportunity to communicate with him. As it was pointed out, just a pig valve being the only choice is absurd! But then again, it was the cath surgeon speaking. So . . .
Thank you, thank you, thank you. Pray for Mikaela, around noonish today. Thank you, hugs, Ursula and Mikaela, and family
The misunderstanding with the surgeon and the medical records is not the first time something has been messed up. I have caught them, at CHLA, giving her an intravenous med with the wrong base before. That is because I am fierce, like a mama bear. I stay by my child, each and every one (4), everytime they need me. I stay in the hospital by their side. I ask about everything. No one administers anything without me asking, "What is that? Do we need it? What is the criterion for knowing if we need it?"
When Mikaela had her first valve repair. I was there. Always. When she came out of surgery, they said she would be in ICU three days. She was there three hours. They sent her up to the floor. I was there. I asked about each and every hose, wire, and tube - "What is that? What is it for? What is the criteria for getting it out? Oh, could you call the doctor and we could check? Thank you." One by one, I got all those things out. They tried to give her Morphine. I asked why. I asked, well, what is the next step down? Could we just give her that, then if she cries alot, then we could do the Morphine? No Morphine was needed.
For her initial repair, we had a very kind, compassionate and skilled surgeon at CHLA. He did a non agressive cut to the bicuspid valve. This was done to allow for future valvioplasties to not cause leakeage. Evidently, this worked. This was why the surgeon yesterday assumed that she had not had that done. Evidently, (I asked, and the appointment went over by about an hour) he looked at the pictures of the valve, and drew pictures for me (a first) to explain why he was under that impression. A more aggressive cut would have caused something different to appear. I think he felt bad that he didn't know something that big. And that I had to point it out, on the report in front of him, because I was familiar with the report . . . I guess not everybody demands a copy of the report each time. I have a huge file of them.
I am so glad I had all the info from you guys. Part of that is why he took me much more seriously. I think an uninformed person would have had a catastrophe today. Because of our discussions, he is going to be a little more cautious. We also discussed her veins and previous caths. He will not do a big balloon, but rather, if it is called for, two balloons of smaller caliber from both sides. And I think he is going to be very cautious about accidently ruining the valve, necessitating an immidate replacement. Yes, I think he was embarrassed about being caught being ignorant, or whatever.
Ummm, back to all the questions from you. Not multiple repairs. One repair, multiple balloons. No meds, I don't know why or what there was supposed to be. Greece was awesome!!!! I am a teacher, albeit subtitute at this time, and got to be a chaparone. Oh yeah! And my daughter fund-raised all of her fare. It was a school trip. I really wanted to do this, to spend some quality time with just her, especially in light of the fact I knew the end of the valvioplasties was drawing near. Also, thank you guys for the surgeons info. Diane has pointed out that the guy from Stanford is really good. I am going to make sure I have the opportunity to communicate with him. As it was pointed out, just a pig valve being the only choice is absurd! But then again, it was the cath surgeon speaking. So . . .
Thank you, thank you, thank you. Pray for Mikaela, around noonish today. Thank you, hugs, Ursula and Mikaela, and family
C
clouddancer22
Ok, a couple more replies here.
Brian, thank you, I will definately do that today. Thank you.
Jeanne, yes, it is different for babies and children. It was explained to me that multiple valvioplasties are so successful for babies and children, but they have found that once you reach 18 the valve tends to have alot more calcification, making it fragile. So they approach older people differently. My daughter is 16 1/2 now, not quite a child but not quite an adult. They do want to buy her more time, but they are not sure where she is in the spectrum.
Thank you all again, (((((hugs)))))
Brian, thank you, I will definately do that today. Thank you.
Jeanne, yes, it is different for babies and children. It was explained to me that multiple valvioplasties are so successful for babies and children, but they have found that once you reach 18 the valve tends to have alot more calcification, making it fragile. So they approach older people differently. My daughter is 16 1/2 now, not quite a child but not quite an adult. They do want to buy her more time, but they are not sure where she is in the spectrum.
Thank you all again, (((((hugs)))))
C
clouddancer22
For those of you praying for us, I give you a big hug and say thank you! We got a miracle for our miracle child yesterday, even the nurses said that, yet again.
I won't be posting anymore, but if anyone wants any detail or whatnot, feel free to pm me. I realize now that is the way to go. Thank you all for your info, you don't know how valuable it was, and how much difference it made in my daughter's life.
I won't be posting anymore, but if anyone wants any detail or whatnot, feel free to pm me. I realize now that is the way to go. Thank you all for your info, you don't know how valuable it was, and how much difference it made in my daughter's life.
Ursula,
Good to read that things seem to working out for you and your daughter. But please don't DUMP us. We need you just as much as you needed us. Your journey, no matter how unpleasant, may benefit someone else down the line. We hope and pray you continue to pop up here and visit with us.
We will continue our prayers that you and your daughter are well.
May God Bless,
Danny
Good to read that things seem to working out for you and your daughter. But please don't DUMP us. We need you just as much as you needed us. Your journey, no matter how unpleasant, may benefit someone else down the line. We hope and pray you continue to pop up here and visit with us.
We will continue our prayers that you and your daughter are well.
May God Bless,
Danny
C
clouddancer22
I am not DUMPING you!
I am not DUMPING you!
I was so operating on overload - going from maybe she can keep the valve to an emergency situation in just 10 days . . . . plus all the other things going on around me. I am afraid I have annoyed everyone around me, and online too. Now I can do what I should have been doing for all these years but didn't know any better - online research. I have been relying on doctors for info, but I guess they have been using simple terms and leaving stuff out, not to worry me as they say.
I don't want to bother you guys anymore, I appologize for all the things I have done wrong, I am sure there are plenty, I am not so familiar with the proper ediquette I am afraid. Thank you all, I will still be here, but more lurking. Feel free to pm me, or email me. Hugs all!
I am not DUMPING you!
I was so operating on overload - going from maybe she can keep the valve to an emergency situation in just 10 days . . . . plus all the other things going on around me. I am afraid I have annoyed everyone around me, and online too. Now I can do what I should have been doing for all these years but didn't know any better - online research. I have been relying on doctors for info, but I guess they have been using simple terms and leaving stuff out, not to worry me as they say.
I don't want to bother you guys anymore, I appologize for all the things I have done wrong, I am sure there are plenty, I am not so familiar with the proper ediquette I am afraid. Thank you all, I will still be here, but more lurking. Feel free to pm me, or email me. Hugs all!
