rmlyonsfamily Posted July 12, 2011 Report Share Posted July 12, 2011 Brought her to the local ED last night b/c her BP went way up and her HR went down to 33, c/o shortness of breath and chest pain. Got here and decided not to transport her to Duke b/c it was so late and she was so unstable. She was admitted here into the "high acuity" pediatric unit (step down from PICU). Since here she's seen 3 pediatric doctors, 2 pediatric cardiologists, and SEVERAL med students/fellows. This morning she started throwing PVCs and her feet were nearly black they were so discolored! All docs agree it's time for the pacemaker. Only this hospital doesn't have a Pediatric EP doc... so they called the adult EP doc. His fellow came up first while she was throwing PVCs and in a bad brady... he says yep, time for pacemaker. His attending comes in.... NOPE! He won't do it! Don't really want to transport her 2 hours, she doesn't want to be transported 2 hours, we just want it done, but he wants to do more meds! I told him our stance and he says "I'm going to have to go think about it and come back." That was 3 hours ago! Meanwhile... her BP is low, her heartrate is 36, she's lethargic, can't eat a thing b/c of nausea, can't sit her up in the bed b/c of the dizziness and swimminess, etc.I am one ticked off momma right now! Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 12, 2011 Report Share Posted July 12, 2011 I am so sorry to hear this. As a mother of 2, i could not imagine having to watch my child endure this.... my heart aches for you both, as i know all too well how crappy docs and er's can be. Stand firm and take charge for your daughter..... if you lose your cool, well, hey, sometimes we all do in times like this.... I know i would have lost my cool for sure in this situation. Wow, i just don't know what to say, it's like im so appalled that i just have no words.... im so sorry..... I will be praying fervently for you and your child...... and the doctors too!!!!My heart and thoughts are with you,tennille Quote Link to comment Share on other sites More sharing options...
misstraci Posted July 12, 2011 Report Share Posted July 12, 2011 I also don't know what to say. You are all in my thoughts right now and so sorry for what you and your family are going through. I hope that it gets worked out and soon!!! Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted July 12, 2011 Report Share Posted July 12, 2011 Our thoughts, prayers are with you and I hope everything gets better. Poor girl, makes me wanna call somebody too Keep us in the loop and if you lose your cool, we ALL understand on here.(((HUGS))) to you, your daughter and your family!!! Quote Link to comment Share on other sites More sharing options...
lieze Posted July 12, 2011 Report Share Posted July 12, 2011 I'm so sorry.You have been-well K has been in my thoughts since I first read your story.I would ask if they think she is not stable enough for the pacemaker procedure?Also what are their reasons for thinking the pacemaker is not a good option at this time.Also would it be possible for the cardiologist that is seeing K here to consult K's cardiologist at Duke regarding her case and get his recommendations.I'm putting all my energy right now into getting K stronger so she is ready for what comes next.I did the transfer to Cleveland via 3 hr ambulance drive after an episode where I felt my heart stop but I was obviously a lot stronger than K at that point even though I didn't feel like it.I was throwing PVC's right and left and they acted like it was no big deal.K dear one you are in my prayers.Mama it's hard to know what the right answers are-you have to be so upset.Is there anyway someone can help talk to the doctor for you? Your aunt who is the nurse can she come help?Praying you find a path to answers. Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 12, 2011 Report Share Posted July 12, 2011 I'm with Lieze, can they not talk to the Dr. at Duke? Sometimes some Dr. are so full of themselves they don't do right for the patient? Can you life flight? I know that is extreme, but... Is there a closer children's hospital? Prayers going out to you and K! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 12, 2011 Report Share Posted July 12, 2011 I hope you have heard SOMETHING by now from that cardiologist! You know we are all collectively thinking of you and K! Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 12, 2011 Author Report Share Posted July 12, 2011 Nope - he hasn't came back in the room yet. The nurse just brought her last Midodrine dose for the day and they have decreased her to 7.5 mg. Not sure why - even the nurse isn't sure why. My husband is at a point of wanting to pack her up and make the 2 hour drive to Duke! Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted July 12, 2011 Report Share Posted July 12, 2011 Just wanted to say you and your family are in my thoughts and prayersLynne Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted July 12, 2011 Report Share Posted July 12, 2011 I am so sorry!!! Sending prayers.... hugs to you. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted July 12, 2011 Report Share Posted July 12, 2011 So sorry you guys are going through this. My thoughts are with you and your family. I hope things get resolved quickly! Quote Link to comment Share on other sites More sharing options...
Connie Posted July 12, 2011 Report Share Posted July 12, 2011 I am sorry you have to go through all this. I know Duke's Children's Hospital Cardiology Dept has a cardiologist on call 24/7. I would call Duke and explain the situation to the cardiologist on call. Perhaps he can or have your physician call the Dr at the hospital you are at. I would give it a shot. You have nothing to lose.I hope things stabilize soon. Good Luck. I will be praying for you and your family.Hope Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 13, 2011 Report Share Posted July 13, 2011 YES! Hope great idea, that is what you should do! THEY may say bring her or call your Dr at that hospital. They will obviously understand your daughters condition after all those recent tests. Quote Link to comment Share on other sites More sharing options...
Brye Posted July 13, 2011 Report Share Posted July 13, 2011 Praying, hope the next update is a positive one!!! Isn't a side effect of midodrine bradycardia, maybe that's why they decreased it! Brye Quote Link to comment Share on other sites More sharing options...
Libby Posted July 13, 2011 Report Share Posted July 13, 2011 You and K are in my thoughts. I'm so sorry your family has to deal with this. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted July 13, 2011 Report Share Posted July 13, 2011 I agree, call Duke! You REALLY need to speak with a pediatric EP before doing the surgery if at all possible. Operating on children isn't really operating on small adults. Praying for you both, I can only guess how frightening this must be!Sandy Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 13, 2011 Report Share Posted July 13, 2011 I hope K is doing much, much better! I can't even imagine what you are feeling right now, I've got two children and when my son had surgery at 6 weeks old I was terrified. xoxoxox Can't wait for good news. Quote Link to comment Share on other sites More sharing options...
rach73 Posted July 13, 2011 Report Share Posted July 13, 2011 HiIve just seen this post. I hope K is doing ok and you have managed to get the Drs to listen to you. It must be awful for you to have to stand by and watch this happening.Just to let you know My husband and I are thinking of you.Rach xx Quote Link to comment Share on other sites More sharing options...
jodielynn Posted July 13, 2011 Report Share Posted July 13, 2011 HI,Just wanted to let you know,I am thinking of your family. Hope K is doing ok..Jodie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 13, 2011 Report Share Posted July 13, 2011 Hope things are getting resolved. Please let us know how she's doing when you get a chance. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 13, 2011 Author Report Share Posted July 13, 2011 I have an update one and I'm certain it's one that will get everyone's feather's ruffled... I know ours sure are!We are actually HOME with K and nothing has been done or changed other than she is now throwing more PVCs with increased chest pain. Nice huh!?!Anyhow - last night we requested a transfer to Duke. This morning the doctor came in and said he was suggesting that K see a psychiatrist because he felt strongly that she actually has anorexia, even went as far as to say that anorexia can cause the low heart rate, PVCs, etc. Didn't matter to him that we explained before April 12th - the night she collapsed - she could eat us under a table and was a healthy weight! Furthermore - he went on to say that he talked to Duke and gave them his thoughts, so Duke was refusing the discharge also agreeing that she needed psych services! Didn't matter that she was unstable and throwing PVCs left and right, we could either take her home today or we could take her to the ER at Duke instead of direct admit transfer and force her admission there. So - we brought her home and called our EP nurse. Waiting on a return phone call.On another note - she was started on Robinul Monday. She didn't start throwing the PVCs until Monday. Yesterday evening it occurred to me that the extreme nausea sets in about an hour after the Robinul and then after that the PVCs start with the chest pain and shortness of breath. After an hour of that she bradys out big time in the high 20's and low 30's. Today I paid closer attention and watched the telemetry monitors. 30-40 minutes after the Robinul you can see her heart trying to beat faster. It would go from 30s/40s to trying to jump to 60/70 and throw a PVC, then repeat a few times until shew as stuck in PVC for about an hour, then it would settle in the mid 40's and slowly drop from there until the next round of Robinul was given I mentioned it to the doc who looked at me like I was nuts! So tonight - we are home - and guess what drug K is NOT getting?!?!Her doc at Duke will be back Monday and we will take her there then unless she worsens - then we will drive to Duke, we will not stop at Baptist at all!This is the most frustrating thing I have ever been through! Quote Link to comment Share on other sites More sharing options...
enko Posted July 13, 2011 Report Share Posted July 13, 2011 I'm really sorry about all of this How is K doing now?It's awful - when doc's don't know what to do, they say you're a psych case.. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 13, 2011 Report Share Posted July 13, 2011 Sounds like your doctor has been reading the article I found that was trying to tie POTS and psych problems together!But on a serious note, that sounds like a horrific exerience! I can't imagine that they let her out of the hospital with such awful vitals! I know Monday seems like any eternity for you all, and I hope giving up that one med helps even a little. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 14, 2011 Report Share Posted July 14, 2011 My jaw just hit the floor. I'm stunned. I get frustrated as an adult dealing with this (and Dr's)... if it were my obviously SICK child being treated this way, I'd lose it. Ugh, I can't believe they called Duke and told them she needed a psychiatrist and they believed it?? I hope her actual Doctor there is smarter than that! Maybe you figured it out and it was that medication making things worse. I hope she feels better very soon. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted July 14, 2011 Report Share Posted July 14, 2011 Praying for you all. I wish I could help more than that but prayers have helped me more than I can say. Hope to read a better update soon. Quote Link to comment Share on other sites More sharing options...
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