Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Lesley, I shared similar frustrations when my 17yo Tyler was in the hospital last year. The docs were relaxed about the whole thing, because they ASSUMED what he was doing was typical of people who had similar experiences. They did not listen when I would say, no this is different. I have lots of experience seeing the typical response, and I knew this was different. Each time, in the end my instincts were proven right. Not because I am smarter, but because I was there all the time; I saw the whole picture, not just the snap shot in time, and I knew my son! If her lungs are worse then continuing reflux is a concern! When they advance the g-tube to the j-tube, the trick becomes making sure it does not migrate back up into the stomach. It is only when the j-tube is surgically placed that you can really stop worrying about that. They will need to monitor closely when they start to feed her again! As for the doctor, I just wonder if he is thinking of his typical experiences and thinks he has time to leisurely read the chart throughout the week. It is possible he is right, but there is the possibility that he is not. Is there a way you can express to him your concerns. What I finally did was write down a list of dates and what was done each day, when I showed this to the new pediatrician covering for the week and she listened to me talk about the entire progression of events Tyler went through she GOT IT and we finally started treating him appropriately. Looking at that simple one page list made it so easy for her to come on and catch up to where we were rather than reading the entire chart! Kim L > Dear Kristy > > Answers to questions: > > Amelies three sedation drugs were Chloral Hydrate, Valagon and > medazolam (not diazapam)plus she had a drug to paralyse her whilst > on that oscilator. > > Her sats when she had he arrest were low 60's and the rescussitation > took over 12 minutes to restart her heart but they were bagging her > from 6 minutes, she also had an intra- oscious in the bone marrow > for the adrenaline and so on they couldnt get a vein. > Her blood sugars are low as is her blood pressure, and she is > getting magnesium and potassium supplements because the duiretics > are taking so much away I think. > > I think she is definately struggling with being taken off the drugs > and with the lack of calories its no wonder she is crying and today > after the physio she had a huge screaming cry at me which I have > never heard before she was cross very cross, she has never ever been > cross. > Hopefully they will get her some TPN tomorrow > > They are giving her paracetamol for pain relief. > > thanks for your help and everyone elses > Love > Lesley > > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 , Here's my opinion about the sats in the 60's: Amelie has billions of brain cells, who knows if any were affected. Second, do you know how many times Tyler's sats were in the 30's and he is doing marvelous. Put it in God's hands. I don't say that lightly. If you said her sats were in the teens, maybe we would be looking at another story. Was she a complete arrest without resuscitation for six minutes? Did anyone do CPR? I am just trying to fill in some more blanks before I open my mouth. I am not sure if I understand you correctly...it's the low sats in the 60's when she had her arrest-are you saying you were able to pick up her sats the whole time? It is good to hear they are using the IO needles when it really counts. We are taught in Pediatric Advanced Life Support to not screw (pardon my french) with starting an IV if you can't get it on the 1st attempt in a critical patient--go for the IO (intra-osscious) needle. Poor Amelie. Sometimes our doctor (the Pediatric Intensive Care doctor) will put the kids on Methadone if he thinks it is narcotic withdrawal from the medication. Keep your chin up. I have to go tend my kids. Love, Kristy FAO Kristy Dear Kristy Answers to questions: Amelies three sedation drugs were Chloral Hydrate, Valagon and medazolam (not diazapam)plus she had a drug to paralyse her whilst on that oscilator. Her sats when she had he arrest were low 60's and the rescussitation took over 12 minutes to restart her heart but they were bagging her from 6 minutes, she also had an intra- oscious in the bone marrow for the adrenaline and so on they couldnt get a vein. Her blood sugars are low as is her blood pressure, and she is getting magnesium and potassium supplements because the duiretics are taking so much away I think. I think she is definately struggling with being taken off the drugs and with the lack of calories its no wonder she is crying and today after the physio she had a huge screaming cry at me which I have never heard before she was cross very cross, she has never ever been cross. Hopefully they will get her some TPN tomorrow They are giving her paracetamol for pain relief. thanks for your help and everyone elses Love Lesley Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter), please contact marion@... or visit the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/> - for CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email info@... . 8th International CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 kim dont you hate it when they just dont get it ive had to screamat some coz theyve asked for mumshed gone home she didnt thinkshe needed to be there was just to write uppanadol for temp sutpid they r oh well hugs ellen > > , > > Here's my opinion about the sats in the 60's: Amelie has billions of brain > cells, who knows if any were affected. Second, do you know how many times > Tyler's sats were in the 30's and he is doing marvelous. Put it in God's > hands. I don't say that lightly. If you said her sats were in the teens, > maybe we would be looking at another story. > > Was she a complete arrest without resuscitation for six minutes? Did > anyone do CPR? I am just trying to fill in some more blanks before I open > my mouth. I am not sure if I understand you correctly...it's the low sats > in the 60's when she had her arrest-are you saying you were able to pick up > her sats the whole time? > > It is good to hear they are using the IO needles when it really > counts. We are taught in Pediatric Advanced Life Support to not screw > (pardon my french) with starting an IV if you can't get it on the 1st > attempt in a critical patient--go for the IO (intra-osscious) needle. > > Poor Amelie. Sometimes our doctor (the Pediatric Intensive Care doctor) > will put the kids on Methadone if he thinks it is narcotic withdrawal from > the medication. Keep your chin up. > > I have to go tend my kids. > > Love, > Kristy > FAO Kristy > > > Dear Kristy > > Answers to questions: > > Amelies three sedation drugs were Chloral Hydrate, Valagon and > medazolam (not diazapam)plus she had a drug to paralyse her whilst > on that oscilator. > > Her sats when she had he arrest were low 60's and the rescussitation > took over 12 minutes to restart her heart but they were bagging her > from 6 minutes, she also had an intra- oscious in the bone marrow > for the adrenaline and so on they couldnt get a vein. > Her blood sugars are low as is her blood pressure, and she is > getting magnesium and potassium supplements because the duiretics > are taking so much away I think. > > I think she is definately struggling with being taken off the drugs > and with the lack of calories its no wonder she is crying and today > after the physio she had a huge screaming cry at me which I have > never heard before she was cross very cross, she has never ever been > cross. > Hopefully they will get her some TPN tomorrow > > They are giving her paracetamol for pain relief. > > thanks for your help and everyone elses > Love > Lesley > > > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... > or visit > the web site at http://www.chargesyndrome.org< > http://www.chargesyndrome.org/> - for CHARGE Syndrome Canada information > and membership, please visit http://www.chargesyndrome.ca< > http://www.chargesyndrome.ca/> or email info@...<mailto: > info@...> . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
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