Connie Posted July 14, 2011 Report Share Posted July 14, 2011 I hope your daughter is doing better. It sounds like you are doing a great job watching her and noticing how the medications are effecting her. My son's Dr at Duke is Dr. Carboni and he is an excellent surgeon. He is the Dr that diagnosed my son. If you have to see someone before next Monday, I would ask to see him of possible.I hope things turn around soon for K. Please try to take care of yourself too.Lots of hugs,Hope Quote Link to comment Share on other sites More sharing options...
bensman Posted July 14, 2011 Report Share Posted July 14, 2011 K's Mom,My heart aches for you. I pray you find some answers soon. Keep fighting!Kate Quote Link to comment Share on other sites More sharing options...
yogini Posted July 14, 2011 Report Share Posted July 14, 2011 So sorry you are dealing with all of this. Glad she is going to a better doctor/hospital next time. You have to be extra vigilant when you add new meds. Side effects are so crazy. On the pacer usually they are given when a person has both low BP and low HR. I haven't heard of it when a patient has high BP - and sometimes high BP cause low HR. I think it's permament in most cases, so get lots of opinions before doing it. Hang in there. You sound like a great mom and she is lucky to have you! Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 14, 2011 Author Report Share Posted July 14, 2011 I feel like we are in a bad dream. Yesterday we decided we wanted K moved to Duke where her team is. 3 hours later the doctor at Baptist came in and said that Duke refused the transfer and they were discharging her home. They felt she was stable - despite the PVCs and symptoms. She is actually feeling WORSE than she was when we had her in the ER Monday. I was shocked, but didn't know what to do so we brought her home. Last night I noticed that Baptist changed some instructions on a med so I called the Ped Cardiologist on call at Duke. I was SHOCKED to hear that they had been waiting on us all day!!!!! I told him what we were told and he said his notes read that we were bringing her by car!!!!!After talking with him for a while (it was 9pm) and giving him some vitals and how she was feeling, we kept her home for the night. Waiting to hear from her nurse this morning to take her for a clinic visit where they will decide if they want her in the hospital or at home until Dr. Kanter returns on Monday. Quote Link to comment Share on other sites More sharing options...
enko Posted July 14, 2011 Report Share Posted July 14, 2011 I just can't believe that! That's so rude an unprofessional from that docs I hope that you'll be able to go to Duke and that they'll be able to do something for her soon! How is she feeling now? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 14, 2011 Report Share Posted July 14, 2011 I'm really sorry for all you and your family are going through. I know how scary and frustrating it is only b/c I have been trhough similar experience of being dismissed/misdiagnosed by doctors, as too many of us have. I can't imagine how hard it is when it is your child. It sounds like you are doing a great job being proactive. Let us know how she is doing. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 14, 2011 Report Share Posted July 14, 2011 That miscommunication would make me so mad!!! To watch your child suffer like this and everyone sending her in every direction, I would be furious. Vent here. What else can you do? It sounds like Duke has some incredible doctors. I hope that K can get some relief and comfort soon, she has been through so much. Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 14, 2011 Report Share Posted July 14, 2011 Sounds like that borders on malpractice Quote Link to comment Share on other sites More sharing options...
jekecana Posted July 16, 2011 Report Share Posted July 16, 2011 oh my! That is just ridiculous! I would definitely not go to that hospital ever again! We go to a closer hospital once in a while (our children's hospital is 2.5-3hrs away) but they ALWAYS call and talk to my son's EP or whoever is on call for cardio @ the children's hospital before doing anything. I cannot believe that with a heartrate so low that dr didn't feel it was time for a pacemaker.. I hope your EP is ready to put one in and this will help your daughter feel better! My son has had a pacemaker for bradycardia w/ pauses since he was 19months old (he's now a little over 5) and it was a wonderful thing for us. Good luck! Our thoughts are with you!! If you ever need to talk to another mom w/pacemaker kid, feel free to message me! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 I'm so sorry to just be reading this now. I hope all is well, as you haven't updated this post. Please let us know how you are all doing and you are all in my prayers.x's and love,Bellamia ~ Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted August 6, 2011 Author Report Share Posted August 6, 2011 There is another post that was made when she came home. She is doing well and we hope she can start school in a few weeks. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 Thanks for telling me, I will look for it. My prayers are with all of you ~ BellaMia ~ Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 What a B E A U T I F F L D A U G H T E R you have ~ HUG her for me. She is wise beyond her years ~I feel like I know her ~BLESSINGS AND LOVE~Bellamia~ Quote Link to comment Share on other sites More sharing options...
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