Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 I agree on both counts - if it's possible to fire doctors who don't have time to answer your questions, it's a good thing to do. And if it is possible to get a second opinion, do that, as well. What service is Cedie admitted on (i.e. who is the specialist in charge of this admission)? Is it pulmonology, cardiology, or something else? Is there any way you can get the primary admitting doctor to talk to the pulmonologist with you there? Or have a real care conference. Yes they are busy, but your child is just as important as all the ohter children and that committee meeting. Ask the nurses if the hospital has anyone who can be assigned to " be on your side. " Sometimes it can be a nurse, a genetic counselor, a " hospitalist " (new specialty - a doctor who is the primary pediatrician while the child is in the hospital), or someone from social services. You've got questions ready - you need an advocate that the system will listen to. Good luck - I wish there were a general answer for all hospital systems, but they are all different. Meg Meg Hefner MS Genetic Counselor St. Louis MO meg@... > > ============= > We had our mtg Tuesday- It did not go well. I am just as lost and > confused as ever. The pulmonologist showed up 45 min. late and told > us he could only spare 5 min. He then proceeded to run through all > of the reasons why Cedie is vent dependent that they have ruled out > so far and the 2 possible diagnosis left that could be determined > through the lung & muscle biopses. He did all that in 3 min or so > and then said he had to go. We had some great ?s to ask (thanks in > part to you Kim & Meg) but had no time to ask.. Yesterday I talk to > Gen Surgery about the procedures. For the lung, they would make a 4- > 5cm incision across her chest, open up the chest cavity, and take a > piece of lung. The risks include damaging the lungs more, bleeding > into the lungs, and infection. That doesn't even include the effects > we know we will encounter from the GA! > The pulmon. said (several times) that he would NOT discharge Cedie > without a diagnosis, without these tests... But he also said that if > these tests don't show anything then he is going to insist on the > cardiac cath (cardiologits say she does NOT need one). > We are really at a lost as to what to do. She is doing so well and > really growing. We really hate to put her through all this trauma.. > but we do want her to come home and would like to know why she needs > the vent.. > Any advice? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 I once met with a general surgeon who told me " I wish you'd throw those questions in the garbage " . Kennedy was 6 months of age. She is 8 years old now and he has never and WILL never perform surgery on my daughter. I took a lot of time to painstakingly research and prepare my questions - if you cannot acknowledge me, you will NOT work with my child. Period. (And don't feel bad about it - it's not your job to make her/him feel good, it's your job to do your best for your child) -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 I once met with a general surgeon who told me " I wish you'd throw those questions in the garbage " . Kennedy was 6 months of age. She is 8 years old now and he has never and WILL never perform surgery on my daughter. I took a lot of time to painstakingly research and prepare my questions - if you cannot acknowledge me, you will NOT work with my child. Period. (And don't feel bad about it - it's not your job to make her/him feel good, it's your job to do your best for your child) -- Weir kawfolks@... http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 What if you put your questions in writing, then insist that you will not authroize the procedure until the questions are answered. Do not allow him to place the blame of how well she does or does not do on you - if you feel she must have time just to be, then you deserve to know what is the urgency of doing these tests now, when they carry such a high risk? I will put this bluntly, because you may not get answers unless you do, so I apologize if it is way off target. They are questions none of us like to put into words. Does the pulmonary doctor think Cedie is in danger of dying? If so, then the question is - is she more in danger with the tests or without the tests? Depending on what the tests show - would he do anything different that would improve her chance of living? If he does not think she is in danger of dying, then the same questions apply, except you want to know Depending on what the tests show - would he do anything different that would improve her chance of coming off the vent? Either way Is there any danger in allowing her to come home now on the vent and allowing you all time to be home and be a family when she is doing well and growing, then do the tests later? This is a rough time for you. I hope you get the answers you need to feel okay in making your decisions. Another idea is that there might be another doctor who is more willing to answer these questions. Your pediatrician or cardiologist might know what the pulmonary doctors are looking for and be able to answer your questions. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 What if you put your questions in writing, then insist that you will not authroize the procedure until the questions are answered. Do not allow him to place the blame of how well she does or does not do on you - if you feel she must have time just to be, then you deserve to know what is the urgency of doing these tests now, when they carry such a high risk? I will put this bluntly, because you may not get answers unless you do, so I apologize if it is way off target. They are questions none of us like to put into words. Does the pulmonary doctor think Cedie is in danger of dying? If so, then the question is - is she more in danger with the tests or without the tests? Depending on what the tests show - would he do anything different that would improve her chance of living? If he does not think she is in danger of dying, then the same questions apply, except you want to know Depending on what the tests show - would he do anything different that would improve her chance of coming off the vent? Either way Is there any danger in allowing her to come home now on the vent and allowing you all time to be home and be a family when she is doing well and growing, then do the tests later? This is a rough time for you. I hope you get the answers you need to feel okay in making your decisions. Another idea is that there might be another doctor who is more willing to answer these questions. Your pediatrician or cardiologist might know what the pulmonary doctors are looking for and be able to answer your questions. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Thank you for your reply. I bet you were stunned when he said that! Unfortunately, this pulmonologist and his partner are the only two in our area (Memphis, TN). They each work alternating months at the hospital. I am looking into sending her records to a pulmonologist in Nashville for a second opinion. If they would ever discharge her, I could take her there myself... > > I once met with a general surgeon who told me " I wish you'd throw those > questions in the garbage " . Kennedy was 6 months of age. She is 8 years old > now and he has never and WILL never perform surgery on my daughter. > I took a lot of time to painstakingly research and prepare my questions - if > you cannot acknowledge me, you will NOT work with my child. Period. > (And don't feel bad about it - it's not your job to make her/him feel good, > it's your job to do your best for your child) > > -- > Weir > kawfolks@... > http://ca.geocities.com/weirfamily@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Thank you for your reply. I bet you were stunned when he said that! Unfortunately, this pulmonologist and his partner are the only two in our area (Memphis, TN). They each work alternating months at the hospital. I am looking into sending her records to a pulmonologist in Nashville for a second opinion. If they would ever discharge her, I could take her there myself... > > I once met with a general surgeon who told me " I wish you'd throw those > questions in the garbage " . Kennedy was 6 months of age. She is 8 years old > now and he has never and WILL never perform surgery on my daughter. > I took a lot of time to painstakingly research and prepare my questions - if > you cannot acknowledge me, you will NOT work with my child. Period. > (And don't feel bad about it - it's not your job to make her/him feel good, > it's your job to do your best for your child) > > -- > Weir > kawfolks@... > http://ca.geocities.com/weirfamily@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Cedie is admitted under the pulmonologist.... Another issue- he and his partner are the only two pulmonologists in this area. I could (I'm in the process of researching this) get a second opinion from a pulmon. in Nashville (4 hrs away). I never heard of a hospitalist- I'll have to look into that. Anyhow, thank you for your advice. This list is really helping me get a handle on this stuff. I can't express how much I appreciate all of your input :-) Mock - mom to Cedie Lynn (9 mth old as of yesterday) Memphis, TN > > > > ============= > > We had our mtg Tuesday- It did not go well. I am just as lost and > > confused as ever. The pulmonologist showed up 45 min. late and told > > us he could only spare 5 min. He then proceeded to run through all > > of the reasons why Cedie is vent dependent that they have ruled out > > so far and the 2 possible diagnosis left that could be determined > > through the lung & muscle biopses. He did all that in 3 min or so > > and then said he had to go. We had some great ?s to ask (thanks in > > part to you Kim & Meg) but had no time to ask.. Yesterday I talk to > > Gen Surgery about the procedures. For the lung, they would make a 4- > > 5cm incision across her chest, open up the chest cavity, and take a > > piece of lung. The risks include damaging the lungs more, bleeding > > into the lungs, and infection. That doesn't even include the effects > > we know we will encounter from the GA! > > The pulmon. said (several times) that he would NOT discharge Cedie > > without a diagnosis, without these tests... But he also said that if > > these tests don't show anything then he is going to insist on the > > cardiac cath (cardiologits say she does NOT need one). > > We are really at a lost as to what to do. She is doing so well and > > really growing. We really hate to put her through all this trauma.. > > but we do want her to come home and would like to know why she needs > > the vent.. > > Any advice? > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.