Guest guest Posted April 13, 2007 Report Share Posted April 13, 2007 hugs to you all > > Thank you all for your kind words and support. > I just got a call from Racheal from the hospital and they have > scheduled for surgery for tomorrow to insert the pacemaker. I > guess they feel it is necessary! I hope they are doing the right thing. > I have lost a bit of faith in doctors, but what else can you do but > hope they are doing the right thing. Maybe I should look at it a > different way, and think of what they have done so far to keep him > alive! > Will try to keep you all updated. > > Liz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2007 Report Share Posted April 15, 2007 Thanks for keeping us updated on 's progress. I hope he continues to do well. Best wishes, is (Mum to , UK) > > made it though the surgery to implant the pacemaker and is doing > fine so far.I will try to think positive and not about any possible > complications. Thank you to all of you for your thoughts and support. > > Hope tomorrow is a better day for all of us. > > Liz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 do u want an opinion on that if so my opinion is its a very good letter > > > > > ----- Original Message ----- > From: Racheal s > To: advocate@... > Sent: Monday, April 23, 2007 4:16 PM > > To whom it may concern: > > My son has been a patient on and off at Doernbecher's. He has CHARGE > Syndrome. Most of the staff has been a blessing, However I have > rising concerns about one of your specialtists. My son is > s. He has had 4 heart surgeries which have been successful. > At the age of 61/2 months he started having siezures. This is due to > his CHARGE along with brain abnormalities. If you read up on the > syndrome you will find that in fact children whith CHARGE if they are > going to start having siezures they typically start at that age. > > Since he has been diagnosed by Doernbecher's neurology dept. with > having siezures he has been sent back and forth from Medford to > Doernbechers with concerning siezures. Now we are at the point where > the Head of Nuerology Dr. Koch will not discuss 's siezures > because now they don't think that is what they are, When they are the > ones who diagnosed him. Dr. Koch has indeed been rude to 's > pediatrician, and barely offers her the help she needs to treat him > when he is home. He has been re-hospitalized again the day after we > got back from up there. He was completely taken off his > Phenabarbitol within two days instead of a slow wean. I believe this > caused a slew of siezures. One that lasted 45minutes this past > Saturday. Thankfully my son is o.k. > > I feel that he is not getting proper care by the Nuerology team at > Doernbecher. I am thouroughly disappointed. These people are here > to try to help in any case scenario and to give families the best > care and unfortunately in 's case I feel he did not get that from > Dr. Koch. > We have a specialists here in Medford who has done an EEG on and > found that these are indeed siezures. It's good to know there is > someone who doesn't treat his patients and families with such > disrespect. > > On one last note, my opinions are towards Neurology. I have great > respect for the cardiology team, the PICU nurses,and the 9th floor > nurses. Marchenke has been a great asset to my sons care. > > Sincerely, > Racheal s > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Thank you for your opinion, LIz -- Re: in Oregon do u want an opinion on that if so my opinion is its a very good letter > > > > > ----- Original Message ----- > From: Racheal s > To: advocate@... > Sent: Monday, April 23, 2007 4:16 PM > > To whom it may concern: > > My son has been a patient on and off at Doernbecher's. He has CHARGE > Syndrome. Most of the staff has been a blessing, However I have > rising concerns about one of your specialtists. My son is > s. He has had 4 heart surgeries which have been successful. > At the age of 61/2 months he started having siezures. This is due to > his CHARGE along with brain abnormalities. If you read up on the > syndrome you will find that in fact children whith CHARGE if they are > going to start having siezures they typically start at that age. > > Since he has been diagnosed by Doernbecher's neurology dept. with > having siezures he has been sent back and forth from Medford to > Doernbechers with concerning siezures. Now we are at the point where > the Head of Nuerology Dr. Koch will not discuss 's siezures > because now they don't think that is what they are, When they are the > ones who diagnosed him. Dr. Koch has indeed been rude to 's > pediatrician, and barely offers her the help she needs to treat him > when he is home. He has been re-hospitalized again the day after we > got back from up there. He was completely taken off his > Phenabarbitol within two days instead of a slow wean. I believe this > caused a slew of siezures. One that lasted 45minutes this past > Saturday. Thankfully my son is o.k. > > I feel that he is not getting proper care by the Nuerology team at > Doernbecher. I am thouroughly disappointed. These people are here > to try to help in any case scenario and to give families the best > care and unfortunately in 's case I feel he did not get that from > Dr. Koch. > We have a specialists here in Medford who has done an EEG on and > found that these are indeed siezures. It's good to know there is > someone who doesn't treat his patients and families with such > disrespect. > > On one last note, my opinions are towards Neurology. I have great > respect for the cardiology team, the PICU nurses,and the 9th floor > nurses. Marchenke has been a great asset to my sons care. > > Sincerely, > Racheal s > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 we too go up to doernbecher. we had an great team and still do. mathew had a couple of siezures when he came back from emmanual from his heart surgery with dr. star. i think they did take him off the meds way to fast. he has not had anymore.all i can say is you are with your son 24/7. trust your gut!!!!!! it was a long first two years for us. if you need someone to call my name is stacey and my son is mathew. he is going to be 7 in the end of july. we are going to the conference this year too. call me any time!!! and i mean that! . my e-mail is uspacey@.... take care. stacey mom to mathew 7 (CHARGEr), rylie 5 , cameron 2 in Oregon ----- Original Message ----- From: Racheal s To: advocate@... Sent: Monday, April 23, 2007 4:16 PM To whom it may concern: My son has been a patient on and off at Doernbecher's. He has CHARGE Syndrome. Most of the staff has been a blessing, However I have rising concerns about one of your specialtists. My son is s. He has had 4 heart surgeries which have been successful. At the age of 61/2 months he started having siezures. This is due to his CHARGE along with brain abnormalities. If you read up on the syndrome you will find that in fact children whith CHARGE if they are going to start having siezures they typically start at that age. Since he has been diagnosed by Doernbecher's neurology dept. with having siezures he has been sent back and forth from Medford to Doernbechers with concerning siezures. Now we are at the point where the Head of Nuerology Dr. Koch will not discuss 's siezures because now they don't think that is what they are, When they are the ones who diagnosed him. Dr. Koch has indeed been rude to 's pediatrician, and barely offers her the help she needs to treat him when he is home. He has been re-hospitalized again the day after we got back from up there. He was completely taken off his Phenabarbitol within two days instead of a slow wean. I believe this caused a slew of siezures. One that lasted 45minutes this past Saturday. Thankfully my son is o.k. I feel that he is not getting proper care by the Nuerology team at Doernbecher. I am thouroughly disappointed. These people are here to try to help in any case scenario and to give families the best care and unfortunately in 's case I feel he did not get that from Dr. Koch. We have a specialists here in Medford who has done an EEG on and found that these are indeed siezures. It's good to know there is someone who doesn't treat his patients and families with such disrespect. On one last note, my opinions are towards Neurology. I have great respect for the cardiology team, the PICU nurses,and the 9th floor nurses. Marchenke has been a great asset to my sons care. Sincerely, Racheal s ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 we too go up to doernbecher. we had an great team and still do. mathew had a couple of siezures when he came back from emmanual from his heart surgery with dr. star. i think they did take him off the meds way to fast. he has not had anymore.all i can say is you are with your son 24/7. trust your gut!!!!!! it was a long first two years for us. if you need someone to call my name is stacey and my son is mathew. he is going to be 7 in the end of july. we are going to the conference this year too. call me any time!!! and i mean that! . my e-mail is uspacey@.... take care. stacey mom to mathew 7 (CHARGEr), rylie 5 , cameron 2 in Oregon ----- Original Message ----- From: Racheal s To: advocate@... Sent: Monday, April 23, 2007 4:16 PM To whom it may concern: My son has been a patient on and off at Doernbecher's. He has CHARGE Syndrome. Most of the staff has been a blessing, However I have rising concerns about one of your specialtists. My son is s. He has had 4 heart surgeries which have been successful. At the age of 61/2 months he started having siezures. This is due to his CHARGE along with brain abnormalities. If you read up on the syndrome you will find that in fact children whith CHARGE if they are going to start having siezures they typically start at that age. Since he has been diagnosed by Doernbecher's neurology dept. with having siezures he has been sent back and forth from Medford to Doernbechers with concerning siezures. Now we are at the point where the Head of Nuerology Dr. Koch will not discuss 's siezures because now they don't think that is what they are, When they are the ones who diagnosed him. Dr. Koch has indeed been rude to 's pediatrician, and barely offers her the help she needs to treat him when he is home. He has been re-hospitalized again the day after we got back from up there. He was completely taken off his Phenabarbitol within two days instead of a slow wean. I believe this caused a slew of siezures. One that lasted 45minutes this past Saturday. Thankfully my son is o.k. I feel that he is not getting proper care by the Nuerology team at Doernbecher. I am thouroughly disappointed. These people are here to try to help in any case scenario and to give families the best care and unfortunately in 's case I feel he did not get that from Dr. Koch. We have a specialists here in Medford who has done an EEG on and found that these are indeed siezures. It's good to know there is someone who doesn't treat his patients and families with such disrespect. On one last note, my opinions are towards Neurology. I have great respect for the cardiology team, the PICU nurses,and the 9th floor nurses. Marchenke has been a great asset to my sons care. Sincerely, Racheal s ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 we too go up to doernbecher. we had an great team and still do. mathew had a couple of siezures when he came back from emmanual from his heart surgery with dr. star. i think they did take him off the meds way to fast. he has not had anymore.all i can say is you are with your son 24/7. trust your gut!!!!!! it was a long first two years for us. if you need someone to call my name is stacey and my son is mathew. he is going to be 7 in the end of july. we are going to the conference this year too. call me any time!!! and i mean that! . my e-mail is uspacey@.... take care. stacey mom to mathew 7 (CHARGEr), rylie 5 , cameron 2 in Oregon ----- Original Message ----- From: Racheal s To: advocate@... Sent: Monday, April 23, 2007 4:16 PM To whom it may concern: My son has been a patient on and off at Doernbecher's. He has CHARGE Syndrome. Most of the staff has been a blessing, However I have rising concerns about one of your specialtists. My son is s. He has had 4 heart surgeries which have been successful. At the age of 61/2 months he started having siezures. This is due to his CHARGE along with brain abnormalities. If you read up on the syndrome you will find that in fact children whith CHARGE if they are going to start having siezures they typically start at that age. Since he has been diagnosed by Doernbecher's neurology dept. with having siezures he has been sent back and forth from Medford to Doernbechers with concerning siezures. Now we are at the point where the Head of Nuerology Dr. Koch will not discuss 's siezures because now they don't think that is what they are, When they are the ones who diagnosed him. Dr. Koch has indeed been rude to 's pediatrician, and barely offers her the help she needs to treat him when he is home. He has been re-hospitalized again the day after we got back from up there. He was completely taken off his Phenabarbitol within two days instead of a slow wean. I believe this caused a slew of siezures. One that lasted 45minutes this past Saturday. Thankfully my son is o.k. I feel that he is not getting proper care by the Nuerology team at Doernbecher. I am thouroughly disappointed. These people are here to try to help in any case scenario and to give families the best care and unfortunately in 's case I feel he did not get that from Dr. Koch. We have a specialists here in Medford who has done an EEG on and found that these are indeed siezures. It's good to know there is someone who doesn't treat his patients and families with such disrespect. On one last note, my opinions are towards Neurology. I have great respect for the cardiology team, the PICU nurses,and the 9th floor nurses. Marchenke has been a great asset to my sons care. Sincerely, Racheal s ________________________________________________________________________ AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 What a cute little bubble he is! Love those cheeks! Mom to Kennedy www.chargesyndrome.info > > http://www.smilebox.com/playBlog/4e6a51344f5445330a > > click on link above to see a little slide show of , Mom and sister > Meagan > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 What a sweetie, Liz! I just wanted to reach through the computer and pinch those little cheeks! , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 He's a doll!!! Michele W Aubrie's mom 9 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I know, everyone does, hehehe.., I think that is why they keep getting bigger. His mom says he comes from a long line of fat cheeks!, -- Re: in Oregon What a sweetie, Liz! I just wanted to reach through the computer and pinch those little cheeks! , mom to (5) http://kauffmanlak.blogspot.com/ --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 OOOOHHHHHH, I agree, THOSE CHEEKS!!! AND THOSE THIGHS!!!! Everything is squeezable. pam in Oregon http://www.smilebox.com/playBlog/4e6a51344f5445330a click on link above to see a little slide show of , Mom and sister Meagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 So sweet--thank you for sharing. I'm glad to hear he is able to be at home now. (mom to Evan, 21 months) liz_dolz elizabeth@...> wrote: http://www.smilebox.com/playBlog/4e6a51344f5445330a click on link above to see a little slide show of , Mom and sister Meagan --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2007 Report Share Posted May 2, 2007 Liz- had CVL placed a week b4 she was discharged. Back then, you couldn't leave the hospital with one, so it was only in for a week. had exhausted available veins, so it was this or a " cut down " if she needed IV again, we didn't have much of a choice about it. She also had trach, which was much more involved than CVL. Truly, there's nothing sterile about a hospital ward. I wouldn't imagine it will stay there too long. (2 wks-to a month max? just an opinion.) PS So wonderful for everyone that he is home. He's really something. " sweet cheeks " to the max. And his eye's say- " I'm somebody to be reckoned with. If you only knew what I know! " I see abundance of determination there, and he sure has proved that out already. ;-) in Ma. ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 Vinny had 2 six-week courses of IV antibiotics (for endocarditis and then 2 months later for mediastinitis). They were a necessity and having the central lines in allowed him to come home. Lucky for us (I say that in jest, of course), he was only an infant who had VERY little movement at all. He did not pull on the lines or try to touch them. I cannot imagine having a central line now as he is nearing 2 years old and completely mobile. Best wishes and we are still praying for you! ina --- liz_dolz elizabeth@...> wrote: > Hi, I was wondering if any kids out there have a > central line implanted > for a direct access to veins in order to give IV > medication on > emergency basis, as during a seizure. I guess > has always been a > bit hard to get iv started and now that he is having > seizures and may > need quick access to vein for iv, his pediatrician > suggested that he > get the central line. He had to be transfered to > Doernbecker to get > this done. I guess this was a decision that was made > by his mom but I > dont feel very good about it. I just wonder if it > was done more out of > convenience than necessity, and of course there are > risks such as blood > clot or infection, so it makes me worried.There is > also maintenence > just like a trach, you need to keep flushed etc. > Pros and cons. > Any opinions? > Liz > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 Liz- As mother to a child who might hold the title of World's Hardest Stick, I can say I've often wondered if keeping the central line she had in the hospital would have been a good thing. Rasha only needs blood drawn as needed and occasional tests, such as the renal scan we haven't been able to do over this past year since we can't get the IV started, and it is HORRIBLE. We needed to draw her blood last week to do tests (for what has turned out to be a C. Diff infection) and three people tried on two different days-stuck her three times each and still didn't get a drop. She now looks like she should be in an episode of Intervention with the bruising on her arms. It's horrible. I agree with your hesitance-I don't believe in putting holes in a body where they don't go if they don't have to. I also hate to think of what happens to a person-especially a child if they don't know what's going on-when the become a human pin cushion. Janay Mom to Rasha (21 mos), Malik (3) and Jordyn (12) > > > Hi, I was wondering if any kids out there have a > > central line implanted > > for a direct access to veins in order to give IV > > medication on > > emergency basis, as during a seizure. I guess > > has always been a > > bit hard to get iv started and now that he is having > > seizures and may > > need quick access to vein for iv, his pediatrician > > suggested that he > > get the central line. He had to be transfered to > > Doernbecker to get > > this done. I guess this was a decision that was made > > by his mom but I > > dont feel very good about it. I just wonder if it > > was done more out of > > convenience than necessity, and of course there are > > risks such as blood > > clot or infection, so it makes me worried.There is > > also maintenence > > just like a trach, you need to keep flushed etc. > > Pros and cons. > > Any opinions? > > Liz > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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